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Wednesday, December 5, 2007, 10 PM CST

**New pictures posted **

“Recovery Mode”

We are all finally recovering from our Thanksgiving Flu-all-arouna. Jack is feeling much better, probably thanks to getting the full effect of his heart medication via a better-placed IV. It’s amazing to see the difference in him! His butt rash is better and therefore, life is better. When Jack’s butt hurts – we all hurt!

We’ve been getting ready for the Christmas holiday and decorating the house. The boys kind of get the “concept” of Santa Claus. They know he lives in the North Pole (the “Pole” as Jack calls it) and that he uses reindeer to get here. The best part is using the threat of Santa and the presents to get some better behavior. It sure has worked! Cooper watched a little bit of “Rudolf” last night and got really scared about the abominable snowman. He woke up with nightmares about him. He didn’t watch the show long enough to learn that he turns out to be a nice snowman. Mom keeps trying to tell him, but he says “No, he’s bad.” END of story! We’re going to have to work through the Rudolf story.



I am responsible for putting the star on the top of the tree!


I had nothing to do with the breaking of that ornament!

On Thursday we are going to a holiday open house and we will see Santa. Mom already warned the boys she IS taking pictures and put them on the “cheese” alert. Yeah, right. We’ll see just how much cooperation she’ll get (the boys are scheduled to get their school pictures re-taken on Dec. 10th. Notice I wrote "re-taken"). Cooper keeps saying he wants a “giant, red, big, shiny car” from Santa. Well, Coop already has a big, green all terrain Jeep he can drive, so we are not quite sure what he’s talking about…Mom said she thinks he wants a real mini-Cooper. Oh, brother. He better be happy with the all-terrain Jeep!


Coop thinks he’s going to get a mini-Cooper from Santa!


A REAL mini-Cooper. Stop it. I just can’t stand it…Tell me another one…ha, ha, ha


What do you mean Santa isn’t bringing me anything, Coop?


I’ve been really good, Dad!


I think I see a few bulbs that are burned out. You guys better start over!

I'm sure Santa and everyone else could really guess that the real gift the Corbo's will cherish is a new heart for Jack. It truly is the 'gift of life.' We pray that Jack can get a local heart and it is strong and healthy, so he can be the same.

We are looking forward to closing out this year, but look forward to 2008 with trepidation since we surely know it holds a lot of ups and downs for us. We’ll just take it one day at a time and enjoy each day for what it is.

As always, thanks for checking in on us and your prayers are welcomed and appreciated.

Todd, Robin, Jack & Cooper a/k/a
“The Crazy Corbo’s”

Sunday, November 18, 2007 12:01 AM CST

From Dad

Just a quick update as we prepare for the Thanksgiving holiday.

Jack for the most part has been doing great. He just plain loves school and is very upset if he doesn't get to go (he can't understand why on Tuesday, Thursdays and the weekends he can't go bye bye in the car to Ms. Leslie's class). He is the life of the party when it comes to circle time and singing, often being the most vocal kid in it. Of course, Jack is usually the most refreshed as circle time is the last event of the day, after recess, and while the other kids are playing outside or in the gym, Jack settles down for a quick 'Jack Nap' and is wide eyed and bushy tailed ready for singing, clapping and itsy bitsy spider.

Coop is the teacher's pet, playing protective brother to Jack and helping the teachers organize and get things ready. He likes school also, but tends to run out of gas at the end. It pretty obvious as about two minutes after Mom pulls out of the school parking lot, Coop is snoring in his car seat. (Jack usually makes it to the end of the block, but is awake by the time they reach home - another 'Jack Nap'.) Cooper usually stays asleep and as it is better on everyone if Coop gets his sleep, he sometimes remains in the car for another half hour or so until Dad comes home and carriers him into the house.

Jack has had a few bumps in the road lately however. Last weekend we took Jack into the ER because he was breathing a little funny and our scale indicated he had gained a pound in two days. This is the M O for the past pleural effusions; also, it's been since summer since our last ER visit and I'm sure we were missed. We got there and of course half the caregivers knew Jack. (Is that good or bad?) I carried him into the x-ray room and he sat up for his x-ray. He did a great job and gave everyone a high five on his way out. We went back into our pen in the ER and awaited the results. The docs came back and said there is NO effusion, but there was a little spot on his lungs that might be an early stage of pneumonia. It was so small though, it could just be a splotch on the film too. Jack by this time was over his fear of the ER and thanks to the PICC line did not have to get stuck. He was screaming in joy and yelling ‘hi’ and ‘where’s Coocoo” to everyone he saw. They let us go home and called it a false alarm.

In the next few days Jack seemed to get better but for a nasty diaper rash. Through some ‘assertive suggestions’ Mom was able to get Jack into the best Dermatologist in town (who otherwise wasn’t open until July 2008). The Derma Doc looked at Jack’s bum and said “hum”…”I think I’m going to need to biopsy this”. So, after a shot to numb his bum (yes, that was ‘fun’ and Mom and a nurse had to hold Jack down) he came back in was a knife that looked like a paper punch and took a bit of Jack’s butt. I had arrived by that time and it took Mom, Dad and the doc and nurse to get through that experience. Jack kept saying ‘done! Done!, bye bye in the car, all done! All done!” Tears were shed but after the doc stitched it up and stopped bleeding Jack was fine and was ready to go home. The Derma doc talked to our transplant team at the U and surmised that Jack has a bacterial infection. Apparently this type of infection is quite common to people who have suppressed immune systems and this particular bug can even be fatal if not treated. This hypothesis was confirmed with the biopsy results and we are now on a regime of antibiotics to treat it. We may also find out, pending more blood tests that his immune system is being suppressed too much and we’ll dial back on some of those drugs. It’s been about three days on the antibiotics and while it causes tummy troubles, it does seem to be starting to dry the area up. Jack has weathered it like all the other past bumps and only complains when he has a BM.

Coops continues to explore and is a bright kid. He is making steady progress on the potty training and is motivated by ‘treats’ to keep up the good work. Coops is a tall, skinny kid. He just keeps growing taller but not putting on any weight. Jack at the mean time has grown in both directions and is only about 2 inches shorter and 4 pounds off his brother’s marks. Considering where we were at the beginning of 2007, this is great progress. Most of this progress has been made since the summer hospitalization episodes by finally putting fat back into Jack’s diet (at least through the IV). It’s good to see him grow and start to flourish again.

That’s about it for now, we’ll update again after Turkey day.

Tuesday, November 6, 2007, 11:15 PM CDT

“When it rains, it pours.”

Last night the boys were in their first car accident! The guys were out driving and hit a deer or the deer hit the boys. Thankfully, our Toyota Sienna provided good protection and the boys didn’t really notice that they’d been in an accident. They were busy watching the DVD. However, they didn’t like waiting around on the side of the road for the police, tow truck and for Mama to come get them.

When Mama arrived, Cooper told her, “The car has to go to the car hospital. It’s got a lot of boo-boo’s.”

Yes, lots of boo-boo’s.




The Toyota dealership allowed us to rent a 2008 Highlander from them. We’re a little afraid to drive their brand new car…but it is nice to get a new one. We’re hoping insurance just totals the van because it is never going to be the same again.

The car accident followed an afternoon of Mama being called to school because the nurses weren’t happy with Jack’s breathing and his oxygen saturations. We think Jack wasn’t happy because he had to have his picture taken and had his hair blown dry and a fancy shirt on. Once Mama got there, he seemed to be just fine and resumed his place back in class…The pictures, well, at least they have a retake day.

Thankfully, everyone is safe and sound here -- can’t say the same for the deer.
She didn’t make it.

We could use a little less stress around here.

Thursday, August 30, 2007, 11 a.m. CST

**New pictures posted**

“Settling back in”

Aaah…what a difference between home and the hospital. You don’t realize how much you enjoy your own home until you cannot live there. We have all missed the daily routine of living a “normal” life for the entire summer. It is so nice to be back at Casa Corbo -- we are all having a good time. Mom and Dad are trying to catch up on all the work they’ve tried to manage throughout the summer and attend to the home maintenance stuff that got pushed aside.

The boys are almost back into their routines. Jack does have one issue…insomnia. Apparently, one of his meds gives him insomnia. So for the past few days Jack wakes up about 1 a.m. and wants to stay awake until about 4 a.m., but we’re not talking about playing quietly by himself…No, he’s way too social of a guy, he needs company! And, if he doesn’t get it when he wants it, he will be persistent until someone comes and joins him. You hear “Mom, Dad, Mom, Dad” echo through the house and it gets louder the longer he is ignored. You get the picture.
Cooper has about had it with the late night antics. He walks around saying, “Pooker tired. Jack go to sleep!” Aaah…at least we are at home!

We’re also settling into Jack being attached to an IV. He doesn’t care too much for it and it’s hell to try to dress him every day, but if it keeps us out of the hospital and makes him stronger then that’s what we’ll do. It does make bath time a lot longer and it’s a two-person job since we have to make sure it doesn’t get wet. Jack loves his “bubbles” and especially loves to have his hair washed. He’s also really into having his hair blown dry. It’s the little things…

It’s good to see Cooper feeling a lot more settled now that his family is back together. He’s really enjoying himself and doesn’t mind Jack attacking him. Jack is pretty brazen with him. He loves to pull Cooper’s glasses off of his face. You should see what these glasses look like. Coop must view the world crooked all the time, but this is his second pair in a year and we need to get some mileage out of them. At least there are no band-aids holding them together. There’s no way Mom would allow that. Her boys must be fashionable. They may have tubes coming out of their clothes and crooked glasses, but at least they are going to look good!

You're blind as a bat! You can't see a thing with those things on!



Today, we are attempting to go the State Fair for a couple of hours. The boys went last year and enjoyed themselves, so we’ll give it another try since the weather is 70 degrees and just about perfect for Minnesota. Too bad Mom and Dad are so tired…

We’ve added a few pictures to illustrate what’s been going on since we’ve arrived home. We pray that we can stay here…happy, healthy and waiting for that perfect heart. We’ll be preparing for the boys to start pre-school within the next couple of weeks. I guess you better pray for the school and the teachers. They are going to need them.

Thank you for your continued support and prayers. It means the world and then some.

TTFN – The Corbo Clan



Move it or lose it! And they mean it!



All four wheels on the pavement, Coop!



Did you need that foot, Dad?




Well, I'm ready to go!


P.S. A couple of State Fair pictures. We had a brief, but fun day!




I've got a great view for checking out people. Hey buddy, lay off the cheese curds!



I have no idea where the Sweet Martha's cookies are...



They really tied one on!

Friday, August 17, 2007 7:14 AM CDT

Day 8 - "Back on the List"

Yesterday morning my anxiety level had reached a fever'd pitch, I wanted action and I wanted someone's hide. Jack had just been weighed and he continued to go up, now over two kilos (well over 4 pounds) from his dry weight. Jack had to initiate a new nurse and, while I was in control, there was foam on the sides of my mouth, as I tried to explain to her my concerns and the sad fact that I or Mama Bear couldn't be there until later that morning, so we would miss our opportunity to advocate and push. You have visions of there never being an ending in sight. Will we live here forever?

So all morning I wore the carpet in my office down as I paced and fretted. The doc's got our message and had been calling Robin telling her there would be a new plan in place by the time she got there. Lucky for us also, Thuy, Jack's nanny, decided to pay a visit and spent the morning with Jack.

So, Jack was in a good mood, because he likes Thuy sooo much. This impressed the docs when they rounded. Also, they re-weighed him and found his weight from the morning was grossly overstated and he had actually lost weight. Finally, a trip down to the basement for a high resolution x-ray showed a clear(ing) chest and decrease in edema all around. So the plan was working, the faulty weigh-in in the morning was a kinard and got me going falsely.

Jack had a good night last night and I think this plan may be working. His chest tube has almost completely dried up, so as soon as we get this fluid situation conquered, I think we may be headed home to await a heart. Yes, we can't forget that little detail.

I'm not going to make predictions though, since our journey had been anything but predictable.

My rant two days ago was not meant at anyone in particular, especially not the nurses, since they are largely the foot soldiers following orders. If anything it was aimed at the systems and the doc's that follow it too rigidly and don't listen to parents. The doctors this week are new to us and don't really know us and especially, Jack. I have little patience for them. If they have to be taught humanity again through the righteous anger of a parent, so be it.

We continue to fight and pray for Pee!

Papa Bear out.


Just call me "Puffy"


At least he hasn't lost his sense of humor

Monday, August 13, 2007 8:03 PM CDT

Update - Day 4 "Back on the List"

(The color green signifies organ donation)

Jack is a 1A on the list (the highest priority), same as 3 years ago. Although, you'd never know it -- he's healthly and strong in comparison to his first time. He had an Echo today that showed good function to the heart (although an enlarged atrium) and his chest tube has all but dried up. The evidence is inconclusive at this time as to whether the fluid has moved somewhere else in the body, or has actually dried up. We choose to be optimistic, becasue, IF it has dried up and the Tupperware (plastic chest tube) gets removed from his chest AND his kidney function returns to normal THEN Jack gets to come home.

Mom and Dad and Cooper would like that (and needless to say -- Jack!!) It would give us a chance to regroup, rest and think. We have some decisions to make soon, we need the positive, soothing atmoshpere of Casa Corbo.

Coop and Dad spent a little time together this afternoon. Didn't get much of a chance to do that this weekend, so it was fun. The highlight was as I was busy going through mail in the kitchen, Coops says D"ad, there's a bee in the garage." I say, what does a bee say Coops? He said "tweet, tweet." What? He knows that answer...so I go and look and here's this little hummingbird stuck in our garage. He was up against the ceiling and couldn't figure out how to swoop down and get out. So I grabbed a swimming pool skim net and start to give chase. I talk to Coops about it and he kept saying, "the hummingbird is scared." It was chirping and quite agitated. I finally got the net just around him enough that with one push I got him down and out the garage. He flew off and Coops started to clap. It was fun.

Doesn't take a lot now a days.

TTFN

***************************

Update - Day 3 "Back on the List"

Yeah, that's right, Jack is finally on, back on, the UNOS Transplant list, awaiting his heart. We never thought we'd be writing that three years later.

I'm not exactly sure of his status. I think that didn't get transmitted to me in the hubbub of the past few days. So, Jack finally passed the last of his tests and jumped through all the rings and gets the opportunity again. We're glad he's on the List, he needs a new heart to really start living a life. But, there are so many other emotions that swirl around inside that goes with it. The Listing took a long time, too long, but it's over and he's on it.

Jack in the mean time continues to hang out on the Floor. His chest tube drainage has gone down. It went down to zero today, but that was because he pulled the tube most of the way out last night. A semi-frantic nurse, when she discovered it about 4 a.m., clamped it off to prevent air rushing into his chest and called the CV team. They weren't in a big hurry, saying it wasn't an emergency, so around 2 p.m. we finally got the tube pushed back into his chest and tied off. Nothing has come out since, so that's either really good news, meaning he has dried up, or bad news and the fluid has moved somewhere else. We'll keep an eye on that. Other than the tube, we're just watching his kidney function, but we all believe that this will improve drastically once we get the chest cleaned up. So, in the mean time, we hang out, watch Finding Nemo for the twenty thousandths time and look forward to running laps in the wagon and bubble time. Jack continues to be recognized by the majority of the employees of this hospital, considering how many times he had roamed the hallways in the wagon.

Cooper is doing fine, he now believes that everything is his. "Mine. Mine. No, that's Pookers. Let Pooker try. No Daddy/ Mommy, it's mine." You get the picture, after spending twenty hours in a row in the hospital surrounded by beeps, buzzes, cramped stuffy rooms and crying, then going home and hearing that everything is Pooker's, we'll it's a breath of fresh air...for five minutes...then it starts to grind on you like rush hour traffic.

Anyway, he's so darn cute you have to give him a break. It's a phase, we know, and it shows progress, we know, but still... Coops is making great strides and follows you around the house doing ('trying') everything you do. His teachers have said he has turned into a little chatter box. Also, he has recently started to take an interest in the potty!!!

Holy man, I can't believe I said that, could the end of diapers (at least for Coops) be in sight????

He sits on his little throne and pretends to do his business. No gold yet, but he's intent on striking out and trying.

We are both exhausted. The past few weeks have been more than trying on our stamina.

Anyway, that's about it for now. Hopefully we'll have more regular updates now that Jack is listed.

A recent picture of the boys clowning around. They think it's hilarious to stick their fingers up their noses. Go figure.

Thursday, August 9, 2007 Midnight

Thursday p.m. Update

Well, here we are, still in the Presidential Suite of Fairview Inn. Do you know what amenities you get in the $2,500 per day Presidential Suite?

- A bed on wheels that you can move all about the room and even take a ride down the hallways, and in the elevator
- Sconce lighting in the rooms and mood lighting in the hallways (after 7 p.m.)
- An all ceramic tile bathroom. If you use the pull-cord someone will even come in and help you with any of your needs
- A TV with both a VCR and DVD player that work most of the time
- A concierge to tell you where to go at any time during the day and evening (Actually, there are plenty of other people to tell you where to go too)
- You can order a “wake up” call anytime day or night by pushing a button above your head and people will even come running and wake you up
- Room service (People even deliver narcotics – but only the legal ones)
- Linens that offer the extra benefit of exfoliating your entire body when laid upon or used on your face
- An overhead intercom that announces various activities throughout the day and night

All of those amenities for the value price of $2,500 per day. Doesn’t it make you want to book your stay real soon?

Well the reality is we are stuck here on the floor trying to dry Jack’s chest out. The big problem is his heart is not functioning properly and it’s causing all of this fluid to continue to drain out of the tube. This pacemaker surgery was a very bad idea. His heart function is no better off and now his body has to try to heal with his heart not helping enough. We just don’t see an end in sight yet. He’s also losing lots of his protein and other minerals through this chest tube which in the long run is not good for him. The bottom line is the little guy needs a heart that works properly.

We are still not “listed” as Jack continues to get evaluated for the listing at a snail’s pace. We certainly thought we’d be home by now recuperating for a future transplant surgery. Now all of that is up in the air. We continue living our lives with one at home and one in the hospital. Not an easy task as all we do is manage the kids, work, try to get some sleep, and start it all over again the next day.

Fortunately, Jack is feeling good, despite the Tupperware coming out of his chest. Yesterday, he was dancing in his bed (on his back as best he can) and singing and jabbering. You’d never know what happened to him two weeks ago. That makes it a little easier on his parents who seem to be aging drastically as every day passes by.

Cooper on the other hand is pretty fed up with his revolving door of a life. Some days he doesn’t get to see Daddy at all. Other days he says “bye” to Nanny Thuy and “hello” to Miss Martha (Mommy’s friend) and then cries when they leave because he feels abandoned. Every day he says “I miss Jack. I want to go to the hospital.” He also continues to “hurt” himself and needs medical attention and/or a kiss.

Jack continues on his wagon rides throughout the hospital waving to his numerous fans. He’s the happiest when he’s on the move and riding the elevator.

So that’s what we do. Walk, ride the elevator, walk some more. We even go outside for some fresh air and to catch sight of a few airplanes.

Aaah. Life in the hospital. Well, at least we have the Presidential Suite.

TCC (The Corbo Clan)

Wednesday, July 25, 2007 5:26 AM CDT

Wednesday AM Update

Jack's story ran as the opening story on WCCO Monday night (go to www.wcco.com and you can find his story under the July 23 archive). It was a good piece and hopefully we got the message out...we're trying to promote organ donation. There's not a lot we can do to tangibly help Jack, and since both Robin and I are doer's, we are climbing the walls looking for a way to give this little cub some help. We believe raising awareness of the need for organs is the only way. So, we're going to keep trying. In 2004, WCCO ran three stories on Jack, and shortly after the third story ran a friend of Jack's received his heart. That tragedy's legacy was the restored life of at least one child. That's the message we want to get out.

Jack is still in the PICU. I'm not exactly sure how to report on his progress. He continues to put a lot of fluid out of his chest tube, so much that we are constantly doing the mineral and protein replenishment dance. This dance has continued to put pressure on his kidneys and so there is some consternation about that as well. However, Jack is on full feeds, active, talking and his personality is starting to come through again. He's off the CPAP and his breathing and heart function have steadily improved and are stable. So, we are now on day 8 in the PICU, after we were estimated that it could be a total hospitalization of 5 days or so. We didn't think Jack would only be in the hospital 5 days, knowing what's involved and his history. We tend to take the estimates of recovery and double or triple them for our expectations. I guess we're doing fine with things, now that Jack has stabilized, so it's hard to complain about missed expectations. We want to get him very healthy before we bring him home to start the wait. It's just the darn chest drainage, we wish it would stop (it has slowed some though). (We've been told that they had to cut through a lot of scar tissue to open him up, which causes this and takes a long time to heal.)

So the recovery battle continues. We know he's in good care, so that is comforting.

It looks like most of the work up for re-listing has been completed. I think the plan is to have a care conference in the next few days to go over everything and then put him on The List. From what we know now, Jack will go home with a PICC line on Milrinone. This will help his heart function, and curiously, place his status on The List higher. In 2004 he was the most critical, a 1A, with the national average waiting time (for his age, blood type and organ need) of 70 days. It took 72. Now, he'll be listed either as a 2 or 1B (we've been told 1B, but I want to sandbag a little here until we're listed). The National waiting time for a 2 (age, blood type and organ) is 18 to 24 months. I don't know if a 1B improves that time, but you'd think it would.

Mama and Papa Bear have been doing the 'take care of your cubs and pay the bills dance' that we have become grand masters at. We take shifts at the Hospital, rarely leaving Jack alone for more than 1 hour. (We feel and know that his emotional and spiritual well being are better when were around, plus we play a part of the medical team, providing history, asking questions and being an advocate.) I steal time as often as possible to spend with Coops, while our Nanny and a few friends help fill in the gaps. Mama brings Coops with her on errands and he has become her dinner date several times these past few weeks. We both adjust and stay flexible enough to continue to work. Our jobs provide the necessities (not the least of which is the insurance my employer provides, thanks 3M!) and at least the chance to keep one foot in a 'normal world'. This is a complicated and constantly changing dance, but we've gotten use to it. It's those stupid, little things that start to add up that get to you after a while (e.g. the other day I was outside with Coops and noticed a weed in our flower bed taller than me, household maintenance starts to back up, I put the license renewal sticker on the wrong car, etc...) But we just keep on keeping on and things eventually get taken care of.

Coops has been doing great. His development has just shot through the roof, in all areas. He's a good little boy, who is a little out of sorts because his parents are doing this dance constantly. We try to keep his schedule as regular as possible, surrounded by familiar things and soaked in love. He seems to handle things fine but has gotten in trouble at preschool a couple of times lately. These instances are so out of his behavioral norm that it must be something related to the stress we're all feeling. Also, he has woken up the past two days and told Mom (I've been told Coop sleeps with Mom now a days) that he "misses Jack and he's in the Hospital with the doctors because he has a boo boo on his heart."

These two are a pair that belong together.

Anyway, thanks for listening. Please continue to offer up prayers and tell others to also. We need to reconstitute the Army of Angels that won the war in 2004 for Jack.

TTFN

Monday, July 23, 2007 6:53 PM CDT

Update - Monday afternoon

We wanted to let you know that WCCO - Channel 4 will be doing a story on Jack at 10 p.m. It's the beginning of the second journey. We will diligently work to promote organ donation.

Thanks to Esme Murphy and WCCO for helping us promote giving the gift of life. And to Susan who thinks of ways to help our Jack without ever having met us.

This morning Cooper woke up and said, "I miss Jack, but he's with the doctors because he has a boo-boo on his heart." Oh, the mind of a three-year-old.

More to come later as we all recuperate.

********************************
Jack Robert Corbo has slept most of the weekend. And that is a good thing. The trauma drama of Thursday has pooped him out, and he is just resting. Thank God, that rest is exactly what he needs and albeit very slowly, all of the indicators are starting to point in the right direction (heart, lungs, kidney functions).

We've been blessed with a pair of nurses we have full faith and credit in, allowing us to reconstitute ourselves as well. Friday night I went over to the stowaway room on the Floor and laid in Jack's bed there and watched a two hour movie. It was a stupid, slapstick comedy, but it was great. I did nothing, moved no where, had my feet off these concrete floors and turned my brain off. I called over to Jack's room a few times (in the PICU) and he just kept sleeping. It was therapy for the both of us.

I don't know when Jack will transition over to the Floor, he is taking his time turning around this time. I suppose sometime mid to late next week. It'll be a busy week as we will continue to fight this battle and prepare for the large campaign to come . . . re-listing and another heart transplant.

It's just surreal.

Let me tell you about Coops though. The kid has memorized three Dr. Suess books already. He demands to read them to you, you cannot read them to him without a severe tongue lashing and reprimand. He then explains the books and adds his own comments. I haven't memorized the books, but there's a passage about a character eating too much and his belly bloating. Coops tells us the passage then says, "he has a tummy ache" . . . he gets it too. Wow, I'm impressed (I know he's my boy and I'd be impressed by anything he does, but still, considering where he was last summer, this is dramatic.)

Coops also has some natural athletic talent (although a little clumsy at times...another trait he inherited from me ... the clumsiness that is.) At swimming lessons he kicks and scoops the water and hardly needs the aid of the floatation device.



We finally left and Coops was fast asleep, taking a three hour nap. He had caught a minor cold a few days before, so that coupled with swimming lessons in the morning and water slides around noon had him bushed.

It was a fun day. We played some more that afternoon, just the two of us, then went to the Hospital to pick up Mom and go out to eat. Just the three of us. It was fun and Coop really needed the full attention of his parents after this last week.

He's a good boy and we love him lots.

More to come tomorrow.

Friday, July 20, 2007 1:24 PM CDT

Hey Hey Captain Jack…meet me down by the railroad tracks

So goes the Army cadence I learned to march to. And that’s what we’re doing, we’re marching along!

The third Cardio version performed last night held, along with the loads of various heart rhythm drugs and mineral replacements. Thursday was a hard, hard day for all of us. The rapid loss of fluids, along with it all the reserves of some of these essential minerals (calcium, magnesium, potassium) and his heart medication drugs coupled with the manipulation to the heart muscle itself during surgery (including sticking a pacer peg into one of the atria to see if it would be paced that way) really played havoc with its function yesterday.

It was scary. Having 20 docs in the room (a lot of them were students observing…observing our kid get six joules of electricity shot through his body) and being pushed into a corner…then Dr. Dan says, “everyone clear, not touching the bed are you?” … okay … and Jack does a Croppy Flop in the bed, then emits a low groan. All eyes starred at the monitors…okay bpm is down to 120, holding steady…two minutes … holding steady…get a 12 lead EKG stat … holding steady … blood pressure looks fine … oh no, there he goes … back to 200, 210, 220 bpm. Dr. Dan looks at you and says “sorry” … we’ll call the heart electrician and she if she has anything to add. Fifteen minutes later.. okay, we’ll try another load of amiodorone and then see where that takes us… if we need to, we’ll shock him again.

This process repeated itself three times, finally on number three his heartbeat and rhythm returned to acceptable standards. Dr. Dan explained that it took a while to replace the fluids, minerals and amiodorone (and a blood transfusion) in his body until a point where he could maintain the rhythm. He was right.

Jack proceeded to calm down and entered into a restless sleep. Around 8’ish there was talk about placing him back on the vent, because he was working hard to breath (fluid overloaded by this time, imagine that) and he already had a very difficult day. It was decided to try the BIPAP machine, which provides continuous positive pressure to the lungs, it opens the lungs up and helps oxygenate the bloodstream. He’s been on it several times and always good results. It means a big mask suctioned to your face and any leaks around the mask and face whistle like a train, but it’s better than a straw stuck down your throat doing all the breathing for you. It worked.

Jack was exhausted by then and soon drifted off to sleep.

Around 10 Mom felt comfortable enough to go home and make sure the other Cub was okay. I watched the nurse pour some Kaopectate (sp?) down his g-tube to help him poop. The nurse said, “this stuff really smells awful, you can either put it into his stomach and let it work downwards, or use it in an enema and let it work upwards.” Oh, my boy has to eat shi#! now too apparently. In any case, Jack was so out of it he didn’t mind and it did work. A huge stinky mess erupted around 11 ish, followed by two more during the night. And true to Jack’s fraternity boy demeanor, after a good poop life is good.

Jack slept through the night. His vitals held constant and he rested. He even started to pee a little. Daddy felt comfortable enough to go to sleep also. The good nurses on the Floor have kept Jack’s room in Jack’s name, meaning Daddy could sneak over there and sleep in a little privacy and quiet. I’ve slept in some nasty stink holes during field problems in the Army, but sleeping in the family room with other patient’s family members, on foul smelling couches can be gruesome. Enough on that subject. Anyway, thank you Floor nurses (if you want me to move, just let me know and I will).

This morning Jack was back. He is still irritable, weak and has a ways to go, but he is coming back. He needs to pee more, he needs to get his breathing stabilized again, he needs to keep his heart functioning like it is and he needs to stop putting off so much fluid through the chest tubes…and then he’ll get to move to the floor. And then…we’ll start to think about the future. And then … we’ll get his feeding regime figured out, get him on The List and start that watch.

Here’s a picture of Jack a few hours before the pacemaker repair surgery on Wednesday…



Here’s a picture of Jack a few hours after the pacemaker repair surgery on Wednesday…



And to think, we’ll have to do this again!

We haven’t had a lot of time to rationalize or philosophize about these events and the continuing saga of Jack and his hearts. I wish I could offer some wisdom to try to explain and harmonize these events. We just can’t yet. It’s too early. We love our kid and we want him to live a life. We know him and we know he is a fighter. We know the road that’s ahead of us, we’ve traveled it before. We know what must be done and how. We just don’t know the why.

The not knowing how to answer or even ask the why question causes frustration and anger. I laid in bed last night, my whole body ached, which a 120 year old does when it’s trapped in a 40 year old’s body (we feel that old after these past three years), trying to rationalize with God on that question. I even told him I was angry at Him for allowing this to happen. Then I apologized and said I don’t really mean that. He knew and loves me anyway. He then reached down and held Jack and Cooper last night, allowing them to sleep another night as the innocent, precious children they are. I don’t understand or even like what He does sometimes, but I love him and know we have a good Father.

Wednesday, July 18, 2007, 1:30 PM CDT

Update - Thursday 6 PM

It has been a very hard day for Jack. He has had electrodes plastered on his chest and back with an arc of electricity going between the electrodes three times today (6 Joules each shock). Finally, around 5 pm it worked, the third time was the charm. He has been out of his SVT now for a little over an hour.

The trauma of this has set him back quite a bit. He is not on the vent, but does have a CPAP machine providing pressure. He has received so much fluid today from a variety of things that he is now fluid overloaded. He has had so many narcotics today that he is plain coo coo (maybe thats not such a bad thing).

To top it off, he can't poop and that's been bothering him for over 24 hours. They did an x-ray of his abdomen this morning and discovered he takes after his Dad and is full of shi#!

The most special visitors came and said hello today. I'm not one to show emotions very readily, especially in public, but just the sight of them and knowing why they were here still brings tears to my eyes. It meant everything.

We're doing fine, Jack is finally resting (albeit not totally peacefully) and maybe we can stop digging and start climbing tonight. Pray. Please.

TTFN

*********************

Update - Thursday Noon

Jack did not have a good night. Post surgery has never been a walk in the park, but he's having a difficult with this one. This time he's dropped 1/6th of his body weight in 24 hours and has been in and out of SVT all day. From about 6 am to 9 am his heartbeat would wildly fluxuate. They shocked him around 9:30, as well as loaded him up on a variety of meds. His beat is a regular one now, but at a high rate and borderline SVT. It was another one of those scary moments when you have 20 docs in the room all at once and you get squeezed to the corner of the room holding the phone up in the air so Mom can hear what's going on. We may end up shocking him again soon, unless he gets out of this.

It seems as the day we list him again is a long was off, as we're still fighting this skirmish post op.

****************

Update on Surgery

Jack came out of surgery doing well and was stable throughout. However, the surgery did not work. His atrium is damaged and it cannot be paced. The only option we have left is to get him a new heart. We are devastated that we will have to put him through again so soon. We're not sure why his atrium won't work. It could be several things. He did go a year after transplant without a pacemaker and it could have caused it to work really hard and just damage it.

We will be working with the team to get him re-listed and some tests while we are here that need to be done for re-listing. According to his surgeon, the second time around is easier. He's healthier, stronger, his body has been used to a transplanted heart and his recovery could be 5 days. He will live at home while he waits. The problem is there are not very many toddler-sized hearts available. The wait could be up to 18 months.

We will do everything in our power to garner media attention and get the word out to raise awareness about organ donation. That's all you can do.

Please pray for Jack. It's about time life started being a little more fair to this guy. All the kid does is laugh. How does he do it?

*********************
Update on Wednesday’s surgery

We talked with Jack’s surgeon, Dr. Herrington, today and he is scheduled to be case #2 for her on Wednesday morning unless case #1 gets cancelled. She said she anticipates his surgery lasting 4-5 hours as she will be cracking his chest open (for the third time) and he’s sure to have some scar tissue. She wants to have clear access to attach the leads securely and test them to make sure they are doing what they are needed to do.

She said she is hopeful that this reattachment of the leads will help Jack’s heart function or she would not be putting him through this trauma. She said it will help buy him time with this heart, but that she feels Jack will need another transplant down the road. When? Could be anyone’s guess? It’s up to Jack and his little heart. But it will most likely not be as long as we had hoped and prayed. (Mom and Dad need a moment to recover from the kick in the stomach before we can move on)

We are all tired of watching Jack go through this yo-yo struggle of him being in and out of the hospital over this fluid issue. She also said that Jack will feel much better having a correct heart rhythm. He has responded so well to the IV medication they’ve given him that we are all certain the fluid issue is directly tied to his atrium not functioning optimally.

Dr. Herrington anticipates Jack will take 4-5 days to recover post-surgery and they will run labs and do an echo on him to make sure his heart is functioning the way it should before he’s discharged. She intends on sending him back to the floor after surgery unless for some reason she feels a night in the ICU to be watched more closely is necessary.

In the meantime, we will be getting a second opinion from a transplant team in St. Louis. Jack’s cardiology team wants another team to review his case to make sure there isn’t an idea out there that they haven’t thought of that could help.

Jack is feeling great and was having fun today going for walks around the hospital. Mom got one of the volunteers to take him for awhile so she could rest. You can’t stop for one minute or he starts complaining. We feel so bad for him because he doesn’t know what’s ahead, but we’re praying he feels no pain. We know he’ll be weak, but hopefully the pacing of his atrium will make him feel better. We despise sending him off to be cut open, and yet, know that it needs to be done. How can you be 3-years-old and have had your chest cracked open three times already? Is the third time the charm?

Unfortunately Cooper is feeling the uneasiness of what is going on with Jack and has been a force to be reckoned with. At least we have the neighborhood girls to distract him. He’s so enthralled with running after them and having their attention. Hopefully, they won’t tire of him too soon.

Mom and Dad are tired and emotionally exhausted, but holding strong for our Minnesota Twins. Please keep your prayers coming as we approach Wednesday with fear and hope.
*****************************

We’re in the Joint again and update on Jack’s surgery (new pictures posted too)

Jack went to the clinic on Thursday and had a chest x-ray done because we felt he looked as if he was retaining some extra fluid. Sure enough, we were right. His doctor’s office called on Friday and said that they his cardiologist wanted him to come into the hospital because his fluid around the outside of his lung was slowly starting to accumulate again. It’s the same chronic problem that has been plaguing him since at least November.

His cardiologist wanted him to stay in the hospital and get “tuned up” prior to his lead replacement surgery that they are slating to schedule for this Wednesday (depending on the surgeon’s schedule barring any emergencies). We scheduled Jack to be admitted to the hospital Saturday afternoon, but on Friday evening he looked a little puffy and seemed like he was working just a little too hard to breathe, so we decided to take him in Friday night. Mostly because we wanted to make sure the fluid didn’t accumulate to the point of him needing a chest tube before this surgery. We think it was a good call. He was fine, but the fluid had increased slightly and some of the blood tests indicated that his kidneys were working harder than they need to which means there is extra fluid retaining in his body.

They have been giving him a heart drug that helps keep the blood vessels dilated and the heart squeeze easier. This is a drug that can only be given via IV. There is no oral counterpart to it. Jack responds very well to it, which tells us the extra punch to his cardiac output is what he needs. That’s why we are hoping and praying that replacing the two pacemaker leads to the atrium will give his heart the extra punch it needs to alleviate this problem. It is our last option.

Jack was in the ICU since he was getting the drug, but they moved him back over to the floor today. He’s kind of off in his own little space which is always a good sign that they are not too worried about you. The problem is we are stuck here until Wednesday and we are all ready to climb the walls.

Jack is feeling great and has a lot of energy right now. He’s already lost the extra fluid he had and the extra squeeze he’s getting from his heart is making him feel energized. He’s laughing and playful, but you must keep him moving. He doesn’t want to stay in his room. It’s the problem we have all the time with him. Once he gets a change of scenery, he never wants to go back in the room.

Cooper is once again all out of sorts because our routine is wiped out. He’s been very difficult lately. Everyone is “mine” or “Pooker’s.” If you ask him to do ANYTHING the answer is always “NO!” with a foot stomp for special emphasis. He has been nice to Jack when he’s been at the hospital for us to have a changing of the Guard. He has kissed Jack on the head and Jack has kissed him back and says “Bye, Coo Coo.” Otherwise, everything, and I mean everything, belongs to “Pooker Corbo.”

We still haven’t celebrated the boys’ birthday. We were planning on celebrating it on Sunday and finally getting around to opening their presents, but then Jack went into the hospital. The good thing is they don’t really know what their birthday is except that they get cake. If it were up to Cooper he would eat cake every day. Really it’s not the cake he likes, it’s the icing. We celebrated Nanny Twee’s birthday on Thursday and Coop got to eat a cupcake – or should I say – the frosting. He was thrilled to help blow out the candles, or should I say, spit them out? Twee still ate her cupcake so it must not have been too wet.





We will celebrate the boys’ third birthday this summer!

Well, again we ask for extra special prayers as Jack awaits this surgery on Wednesday. We pray the surgery goes swiftly and effortlessly. We pray that the lead re-attachment is exactly what he needs and his little donor heart is able to fully do its job. He deserves to finally start feeling stronger and to stay out of the ‘joint.’

We have been reminded yesterday and today, not that we need any reminders, about how precious life is and how selflessly people can be as they choose to donate their organs. Jack’s next door neighbor in the PICU yesterday and today was a girl around age 12 who was not meant to live here on earth any longer. Her parents decided to pass on the gift of life to other children. As we were waiting around to move to the floor, we were aware of the arrangements being made all day to line up donor recipients for this girl’s organs. It’s easy to figure out what is going on as family members come and go and talk in the halls and the family lounge about arrangements. When you hang around the hospital long enough, you are strangely and keenly aware of what’s going on. Despite the misinformation that people receive about organ donation, it is a highly regulated process and a lot of planning and coordination go into it. But time is of the essence.

As Robin was arriving to the hospital today, the helicopter was landing on the hospital roof with medical personnel arriving to wait for the organ procurement. It was an odd feeling to know what events were taking place having been on the receiving end of this scenario. We’ll never know how many lives this mourning family was able to save today, but you can be sure that there are families rejoicing tonight in this selfless act of paying it forward to someone else as another Angel earned her wings.

Holding strong.

************************************
Update from July 4th
Greetings from Home!


Jack, along with the rest of his family, has successfully managed to transition back to home life for the past 6 days. It's been good. Jack's new eating schedule seems to be regulating his blood sugar level just fine and we can tell the difference. He no longer has those long, extended periods of annoying complaining and spends a lot of time just having fun. The way a 3-year-old should be.

The only down side is we have to check his glucose levels three times a day (1 hour after each meal) and that involves a little prick of the skin to get some blood. Easy for me to say 'little'; I'm sure Jack wouldn't agree with that characterization. We do it in the heel and the trauma is quickly over then.

The enzyme deficiency issue is being addressed with a supplement called Viokase and Activa Yogurt and seems to be helping. Besides another bad, bad diaper rash, he is having easier bowel movements and his tummy isn't as distended. He seems to be enjoying his food better. We think we've even noticed that his teeth are starting to grow again. They seemed to have stalled in dropping down any further a few months ago. His gums definitely don't look as puffy or red anymore. These little things we almost took as normal a few months ago, but now we notice them and kick ourselves for not being more vocal about investigating them sooner.

The last issue on the trifeca--his heart function--seems to be fine. Although, the big question of when the surgery will take place has not yet been addressed. We took Jack in for an X-ray and blood draw a few days ago and everything looked pretty good. His X-ray actually showed 'improved' pulmonary edema and a dry chest. I had to write that down because it’s not normal to receive good news, in writing, from anything medically-related.

We wait for the scheduling of this surgery with uncertainty. We don't fully understand why or what to expect from it and why isn't it more immediate? Conversely, why do we have to do it all then? Anyway, I'm sure the answer is out there, we've probably glossed over it in the confusion over the new med and eating schedules.

And of course, in the back of our mind, is what then, if this doesn't provide the results we want? We don't know what to think...literally...what the heck does that mean?

Jack, while feeling better and with more energy, nevertheless is still in recovery mode and has taken a little step backwards in development. This is frustrating, as we see his potential is just starting to be scratched, but he doesn't want to show off right now. It's as if he's withdrawn expecting something to happen to him again ... like maybe going back to the Hospital.

Irony.


We are worried about him facing surgery and where it will leave his strength. He is scheduled to start preschool in the fall. We are determined that he will get to be around other kids his age. He may just be in a gait trainer longer than we thought. How many times is a three-year-old supposed to have his chest cracked open? Is the third time the charm?

As if we needed something else to worry about.

On the other hand, we're home and happy. Tomorrow is another day and we have to live today-- today.

Cooper is doing fine, as active and energetic as ever. He loves his 'baby animal school' and sliding in the slip and slide in the back yard.


Coops is a lot of fun to be around now with his constant talking and questioning of everything (okay, fun for a little while). He is definitely a back seat driver as well. I'll be driving and he'll be in the car seat behind me. "Dad, go weft, no I mean right." "Coop, do you want me to go right? But I can't we have to go straight." "No, No, No, Dad, go weft." "Coop, we're going straight." "DAD!!!, go right, go that way!!!" "Sorry Coops, here we go, we have to go straight." "Go weft, go weft, DAD!!!, okay go straight, but then go that way...look...S..T..O..P...spells Stop." "Yes Coop, that spells stop but we're going." "No, Dad, green means go."

Okay, I'm exhausted just typing this in, imagine the conversation after a few miles...I'm ready to stop at Coopers (no relation, but a name of a bar close to the house) for a few belts.

Jack and Cooper finally got their birthday presents on the 4th. We got them one of those battery cars, a Jeep that fits both of them and has enough power to drive off road. Coops seemed to like it as he drove it down the street to show off to the girls. Not sure what he was saying, but probably something like 'hey gals, check out my new wheels.'

Jack wasn't so sure he liked riding with Coops yet. He usually approaches it with some trepidation and then shortly thereafter is ready to go joy riding with his brother.

Well, that’s where we’re at. Holding steady, but just not quite sure of what the immediate future has in store. Please keep the prayers coming.

Here’s a little glimpse of the Corbo July 4th fun!

This is the life!


Jack, you’ve got to try this!


I love this!


You send me to private swimming lessons, but this is the pool I get to practice in?


Okay, okay, I’ll water the flowers. Geesh!


Let’s go check out that new house with the new swingset, okay?

Sunday, July 2, 2007 11 PM CDT

It's good to be HOME!!!



Yes, we made it home today. Jack was thrilled to ride home and said, "Home, Home, Home," the whole way.

Coop was thrilled to see his other half. He was still out of sorts because there was a flurry of activity to get everything settled, but at the end of the day, Cooper said,"I'll take bubbles and then go night-night."

Jack was crying after we checked his glucose in his foot and Cooper went over and patted him and said, "It's okay, Jack, it's okay."

Jack is feeling very good, a little weak from laying in bed for a long time, but still very happy. We're sure getting his sugar stabilized and finding out about his intestinal bacteria and getting that controlled makes him feel like a new boy!

Now, only if we didn't have to go back...we'll think about that later.

Cooper kept up his social graces over the weekend by attending his swimming lessons. They are semi-private with only him and another boy with the teacher. He did really well. He's a natural athlete and dare we say, a unique individual already.





We're all set to enjoy the Fourth of July and our FREEDOM -- literally!

TTFN - The Corbo's

Sunday, June 24, 2007 9 PM CDT

Update #12 - Monday, June 25, 2007


Last night Robin and I were 22 miles apart but we both experienced the same sleepless night, tossing and turning as we contemplated the day ahead.

Jack in the meantime slept the sleep of the innocent.

Jack was in a great mood this morning as we wheeled him down to the cath lab around 8ish. Making jokes and saying 'hi' to folks along the way. In the prep area they slipped him a mickey in his mic-key and soon he was slurring his speech and drifted off to sleep.

They took him and to the cath lab and we went into the waiting room. We have engraved, reserved seats in this room. We waited and read the same National Geographic magazine for the fourth time, waiting, waiting, waiting.

Finally an hour into it the waiting room clerk says "Corbo?", Robin slaps my leg and says go get it. I run up to the desk and take the phone, its the nurse just letting us know Jack is doing okay and they finally have access and are about to start the 'experiment'. This same little scare repeats itself once more as we got an update.

Finally, about 3 hours after we kissed him goodbye, the cath doc comes out and wants us to come into the private consult room. We've been in this room before, and it's never been good news. However, this time the door remains open as he explains what he did. He hands us photos of Jack's heart and says see "this and this here and here"? Oh yeah, we say, not knowing which way was up on the photo. This is good, theres no blockage and no sign of disease.

Great, he goes on to tell us that the pressures inside the heart were a value of 14-15 unpaced and when they did the 'experiment', they had a hard time finding a connectivity spot in the right atrium; but the left side brought those values down to 12-13 when paced. Jack had an 8 in November and a 18-20 last Friday. So, (a) we've made progress on the oral medicines he's on now, which is fantastic; also, no one thought he'd turn around in a week or so, so even mild improvement was great and (b) pacing does improve things.

So, we sat there for a few minutes trying to figure out what all that meant for the future. We asked the doc and he said, well you know us docs like to talk about these things for a while, so we'll be up later today with some recommendations on the course of action to take.

Okay, we go upstairs to our cave and started to nurse out little cubby. His groin is a bloody mess from the sticks and he's out like a lightbulb from all the sedation (no general this time! yeah!). Anyway, we spend until 7 p.m. waiting for this discussion between the docs to conclude and for them to come up and talk to us. Finally, the on-call peds cards Attending comes by and basically says everyone is still thinking about this, and do you have any questions?

We were too tired, having worried most of the night away, to get upset. We finished bathing Jackers and getting his digs all spruced up. We listed 3-4 things we want the docs to work on in the next few days.

I'm oversimplifying things a little, we think, based on bits and pieces we've put together from our observations and experiences, mixed with conversations with certain other friends/docs that because his heart did show improved function when every chamber is paced, that they'll recommend we go back in and fix those wires to the atrium.

We also learned that the surgeon that would do this is scheduled for vacation next week and we probably won't do it until after then, if that's their recommendation. Which, like a lot of things lately, cut two ways. First, the good cut, he's not in a weak, unstable condition and second, the bad cut, we have to wait.

So, at the end of today we don't really know what we're going to do or when we're going to do it. We've heard bits and pieces here and there of what the plan will probably be, but until we get it confirmed from our Cardiologist, we're marking time.

Strangely, we're okay about everything though. If this is what Jack needs to do, to avoid getting another heart so soon after the first, we'll do it. This kid has again shown us him moxy and we're amazed at his strength. His chemistry, heart, kidneys and blood are all very strong and normal, last time we checked. He's come back on his own. We have to wein him off IV lasix, but that shouldn't be too hard. So, in the end, while going back into the chest cavity sucks (sorry, but it does), it's probably the best thing to do and we're prepared to do it.

In the meantime we'll get his glucose, pancreous enzymes, nutrition plan and other GI issues figured out. To be frank, you get better service while an inpatient, so we'll take advantage of it.

So tonight Jack just recovers from the fireworks of today. Peeing the sedation and other drugs out of him and healing all those needle sticks in his bruised body. He needs a little time to heal, as the tape has done more damage than any IV, cath stick or other puncture.

So, all signs look like we're at option 1, 2 and 3; and we're prepared for this.

Coops is doing fine, I ran home quickly this afternoon (while waiting for this conversation to end) and got some clothes. I had enough time to hug my little Coops Cub and see how he's doing. He was busy eating his Beefaroni and carrots and then had no time to spare. He had to get outside and go play with his new friend "Retchen" (it's actually Gretchen, but Poocker (Coops still can't get the p and c in the right order) has a hard time with the G). She's a neighbor whose a few years older, but has taken an interest in Coops. And Coops loves it.

Anyway, more tomorrow, as I'm sure the 'conversation' will be done by then.

Oops - one other thing, for the Corbo family we have officially 'suspended' tomorrow from happening. Instead, tomorrow will be June 27th and we will have a June 26th when Jack returns home and can celebrate this most special day with his brother.


***************

Here's Jack feeling good!

Wednesday, June 20, 2007 12:25 AM CDT

Update 7

Cooper is recovering from his dog bite, looks like he may have a bit of a scar, but we'll wait and see how it heals. He's on an antibiotic as a preventative measure. This event seems to have added to his rocky week; he's very confused with the constant shuffling around with Mom, Dad, and his nanny and different locations. He knows brother Jack has a "boo boo on his heart" and has to live in the Hospital right now, but is having a hard time putting everything together. Consequently, he is really out of sorts and has been acting out. We continue to try to provide some stability to his world, but it's difficult.

Jack has resumed his baseline, with his Creatinine back to normal levels as is his heart rate, weight and other measurements.

We're ready to start looking into longer term issues. The doc's have talked to us about this and frankly...we're upset and still processing the information. Also, we're still waiting for some test results to confirm the working hypothesis.

Our conflicted emotions right now are only lifted with the fact that at this very moment, Jack is singing and being his silly self. Jack is back! This kid (along with his bro) never cease to amaze us!

However, Jack really needs some prayers right now.

When we're ready, we'll talk about this more.

Monday, June 18, 2007 8:54 PM CDT

Update #6

Jack continues to inch along toward his baseline...his Creatinine is down again (1.60), which is about half way to our goal from where we started...people were clapping at rounds about this. A bunch of small changes today ... got the Foley out, starting to eat again (all by mouth!! - the kid is so thirsty he's slurping everything down), down on the O2, up on the Milrinone drip, more pee and weight down and close to dry weight. All positive signs.

The ultimate cause of this is still up for debate. Everyone seems to agree that it has to do with CSA poisoning, but what caused that is what is open for debate. We're waiting for results from urine and stool samples, as well as some other blood draw tests to get some answers. The next few days will hopefully shed some light on things. The leading hypothesis is a stiff right side of the heart, probably since the transplant, that has caused all these side effects over time. We're waiting to find out.

Cooper is home and doing fine...but, last night while taking bubbles I found a big 'scratch' on his side. I looked at it quickly and thought it was a digger he had taken the other day. Mommy looked at it later that night when changing his PJ's and discovered IT WAS A DOG BITE! Daddy got an earful about looking at things closer.


Here's evidence of the bite!

So at midnight last night the Corbo twins were together again...Jack in the PICU and Coops in the ER. Mommy drove Coops back into the hospital. It appears to be superficial in nature with only two teeth breaking the skin and just requires some preventative antibotics. However, we've gotten the ball rolling on assuring justice is done as we discovered later that the dog owner knew that the dog bit Coop, but didn't mention it and that the dog had been aggressive with kids. This dog owner will not make the same mistake twice, and certainly not with a Corbo. Coop's Godparents were shocked and sad to find this out also since it was their neighbor's dog, as they checked him out after the dog growled and nipped at him. He cried for a brief while, which is unusual for Coop, but they couldn't find any offending marks.

Needless to say, with one in the ICU and the events of last year, we were on the edge and ready to pounce to protect out other cubby. He's doing fine now and we just are watching him like a hawk on a chicken just to make sure. When we ask how he got the "boo boo" under his left armpit he says "black puppy did it."

Coop also went for a check-up with the eye doctor. GREAT IMPROVEMENTS! His vision is now 20/25. The doctor commented that he must be wearing his glasses as it was excellent improvement. Then he took the glasses to look at them and wondered how Cooper wears these twisted, scratched up things? Well...one of Jack's favorite past times is to wrestle with Coop and rip them off of his face. Good ole' Coop just laughs. Oh, how he loves his brother!

The latest thing on the agenda is to find Jack an acupuncturist. Mommy wants him to get some acupuncture treatments to help with kidney profusion, digestion and heart function. She finally has all of the doctors on board (okay, all but one, but that's not going to stop her --she's a MOM "Mommy on a mission"). We're hoping Jack will cooperate while he's still a little immobile. Jack may have different ideas...

Thats about it for now. I guess that's enough...

Saturday, June 16, 2007 10:28 PM CDT

Update #5

Well, its not the spring melt yet, but the yellow stream is flowing. It's not fast, but it's steady and helping.

Here's a recap...Creatinine down!!! yeah!!! down to 1.90 from 2.14, far from normal at .75, but looks like we're on the negative slope!!! Keep it up Jackers!!!

Vent is out, breathing is better; albeit several episodes where Mommy and Daddy were scared as Jack was having trouble with junk in his lungs. Some good old fashion BD's (we call it Beatings) has loosen that stuff up in the lungs and Jack is clearing it out. It's helping and he's breathing and sat'ing better as we speak.

Heart seems to be doing fine, no big spikes today, as we had a few the past couple of days. He's still on the milrinone drip to soften the right side of the heart up a bit, every other system is getting better so we assume this is doing it's trick. We probably won't know for sure until we do another heart cath...probably next week.

Jack himself has been sleepy and lately hungry! Haven't got any words out of him, but do get pointing and grunts for water. He's mad and wants to 'eat' and get up and go for a ride in his wagon. So you know his spirit is starting to mend also.

Cooper returned from his pilgrimage and survived the night away from the parents. He discovered that there are a lot of kids in this world and it's fun to play with them. He also learned that his parents in particular are a little bit on the protective side, since he was allowed certain liberties no enjoyed in his abode. We'll see how he uses this knowledge in the next few days. Coops was pretty tired and was calling 'where's mama' last night and 'where's grandma'. Besides that though, he enjoyed himself and is very, very tired from the experience. We want to thank his Godparents so much for this, it helped us.

Mama and Papa bear are okay now that Cub Jack is on the mend. It looks like the short term goals are nearing, probably even get transferred to the Floor sometime early next week. It's time to start to move on to the intermediate and long term goals soon. I leave that until tomorrow though and just enjoy sitting and watching Bear in the Big Blue House with my son tonight.

It's good to be a Daddy.


***********

Update #4 - Saturday night

Lots of prayers, special talks with kidneys and two tennis shoe treads later from pacing and we have liquid gold! Last night I was worried and exhausted, finally my feet gave out around 2 a.m. and still a bone dry diaper. I crawled down the hallway, knowing the way in my sleep, and went into the family waiting lounge. By some stroke of luck, there is no one in there this weekend and I have the whole thing, a big couch, to myself. Probably the first time ever, when Jack has been in the PICU, that I've been able to sleep horizontally and fully stretched out. Anyway, I get snug as a bug and start to think of something else to get my mind off of Jack's kidneys, when the door opens and Kelly, one of our favorite docs, comes in looking for me. Kelly was the one doing chest compressions on Jack a few years ago in a similiar situation. After reserving a bed for me on the adult ward for acute chest pain, Kelly said no worries, just wanted to let you know I'm going to try to put a foley into Jack's penis/ bladder again (failed twice earlier in the day) because we really need to know if he has urine up there and it's just playing shy and not wanting to come out. Okay, cancel the bed upstairs.

I sit up, catch my breath, and mozy on down the hallway. By the time I get to Jack's room, Kelly is done and successful, having done this to Jack several times, it was familiar territory. He said we have urine, not a lot, but we have it.

Good news, at least he's producing some.

I sit and watch urine drip into a bag until around 4 a.m. It was very boring since he only got about 50cc's out, but I was excited for each drop. I went back to bed for a couple of hours, getting up in time for the early morning fireworks (Residence check patients around 6:30, x-rays, lab draw, etc... all before and in preparation for rounds around 8:30). I start watching for a yellow stream again and talk to the kidneys, promise God all kinds of things and wait. As if there was any doubt, God answered and yellow gold started to come out. It didn't gush, but it was steady. It continued all day long, not gushing, but steady, kinda like a mountain stream two weeks before the spring melt. So far today, as I write this, he's negative for the day on his I's and O's!!!

I know this may sound weird, someone spending several paragraphs writing about his son's urine. However, you learn quickly if you spend time in an ICU after some trauma that its the harbinger of good and evil. Some is good, none is bad.

Jack proceeded to have a restless day. The goal was to wein him off the vent, with hopes of taking it out sometime this afternoon. Jack successfully did it, getting that damn tube out around 6 p.m. The day was rough though, Jack never really going to sleep dispite loads of narcotics and pain killers. He was agitated by all the tubes in his body and was obviously in some type of pain. He would constantly point to the door as if he was saying, "Daddy take me home." When the vent was removed Jack had a hard time adjusting to breathing on his own. This happened right at the same time Mama and Papa Bear were changing the guard, so we both had the opportunity to be scarred out of our minds again as Jack tugged for each breath, de-sated into the 70's and had a heart rate in the 180's because he felt stressed. Mama took over and with some effort and loving care (and some cool drugs), got her cub to settle down. At last report he was sleeping, but not totally peaceful yet. However, his breathing and heart rate were better.

His Creatinine level was higher this morning then last, but not by much. Hopfully, and expectidly, it will start to decline tomorrow. Same for his CSA, yesterday it was again in the toxic range (for Jack) at 200, after cutting the dose in half, today it was 135. Jack typically likes it around 80. Jack continues to get loaded with Amiodarone to help regulate the function of the heart and Milrinone to help soften the stiff right side. It seems to be helping, but we won't know for a while for sure. The proof is likely most evident again in the urine, showing the kidneys are no longer suppressed with CSA and being well profused with blood and pressure from the heart. The gold standard is probably another heart cath next week though.

For now, we continue to watch his blood levels and gases, count every cc of pee and keep praying. I think we've turned the corner on short term issues today. Intermediate issues, like the damn pleural effusion and longer term issues like gut motility and absorption are still waiting for us.

Like I said, this is going to be a 15 round heavyweight match. We're still in the early rounds.

What about Coops? Poor guy his world gets turned upside down too during these episodes. First his playmate is gone and then his parents are stressed out and running around town crazy trying to keep the house going and be there for his brother. He's a trooper though and seems to go with the flow. Yesterday he spent time with his Godmother and her two girls (ages 6 and 4). They went swimming and played in the neighborhood. He was so tired when I picked him up he didn't even wake up when we changed cars. Today he went over there again and played and ... is spending the night. This is a huge step for Cooper and a huger step for his Bear parents. I'm sure he'll be fine and have all kinds of fun, with stories to tell later, but we're still worred.

That's about it for now. Please pray for pee again.

Friday, June 15, 2007 5 PM CDT

Update #3 - Friday morning - Heart Cath

So Jackers started out in the cath lab at 7:30 a.m. waiting for his 9 a.m. poke through the groin to pinch off of his precious heart material. Dr. Dan came out to talk with us and told us Jack was a little fragile. His oxygen saturations were dropping and his heart rate had spiked to the 170s. He said he wasn't going to wait too long for anesthesia, he wanted to get going. The biggest scare that no parent ever wants to discuss with a doctor is "What direction do you want us to have in case of a code? Should we take all measures possible to save him?"

Huh? Uhhh. Huh?

The Corbo's say: Do we really NEED to do this right now, if we are discussing code measures? Dr. Dan said yes. The benefits outweigh the risks.

Okay. Mama Bear says "You do everything possible to avoid even having to get anywhere near Code measures, okay?"

We also pleaded to have calls out to us to let us know the status of things. Dr. Dan promised, and they obliged. They kept us updated. Things were going well. Jack was rock solid. That's our boy. This kid has the will of a lion. Don't think he isn't strong, either, because he sure is.

So, Mama and Papa Bears wait anxiously pacing in Cath Lab waiting room while everyone in there stares at us. Mama Bear looks a little like Tammy Faye Baker who ran into a wall while drunk. All of the make up used to hide her fatigue was everywhere it wasn't supposed to be. Started by Dr. Dan's code questions.

Dr. Dan came out to talk to us and told us that Jack was rock solid once they got started and certainly held his own. The pressures in his right atrium are much higher than they've ever been. They went from 8 to 18. In layperson's terms the blood circulating through the parts of his heart isn't what it should be. We need to relax his right, top side of his heart (called the Atrium). What's causing this? The first thought is always rejection, the second is the high levels of cyclosporine (referred to as CSA), one of two anti-rejection drugs he needs. We need to wait until ths afternoon to get the results of the biopsy. The other issue was his top right lobe of his lung had collapsed from the fluid that has plagued him. This was causing his low saturations. The stiffness in his heart is causing extra pressure on his kidneys. He needs to pee, but he's got these issues preventing it.

Jackers beat us up to the PICU. There he was stretched out on his bed like the little prince that he is.

So, since Jack has been back in his room he has endured the following:

A chest tube inserted near his ribs to drain the fluid off (150 cc's came out right away)

A central line in order to get any vital medications (another poke in the groin)

An echo

A renal ultrasound (yes, there is pee in his bladder)

Multiple blood draws (through an existing IV)

And they have made two attempts to get a foley cathedar in his penis.

During all of this Jack has been receiving hits of Phentanol and Versed (sp?) to keep him comfortable. He does have a high tolerance for these drugs.

The good news: NO REJECTION!!! It came back at zero! Dr. B, his transplant cardiologist, said "I'm very relieved." They are going to test the blood for humeral rejection which is not your textbook rejection, but we're not really all that worried about that.

The theory right now is that this is CSA-related and we need to get his heart relaxed, cut way back on the CSA, fix the pleural effusion, and when he's feeling better, investigate his digestion issue and look at tying off the lymph nodes that are leaking the fluid. The hope is that once the pressures in his heart relax, that will help profuse his kidneys and get him to PEE! The name of the game right now is PEE, PEE, PEE.

So that's where we stand. Still scared, but stable. We are so very thankful for the team of doctors and nurses that work so hard to keep Jack stable and get him better. They really care about the little guy. And let's face it...he's awfully cute. How do you not fall in love with him?

We can use all the prayers we can get to help Jack's heart relax and to pee. The poor little guy looks like a puffy pin cushion.

He will be celebrating his 3rd Birthday along with his Coo-Coo (Cooper) and he can have anything he wants for his birthday-- he's earned it.


Update #2

...not a lot of news to report, we're doing a heart biopsy tomorrow morning to rule out rejection and get some internal heart pressures.

...today was better than yesterday...we think there is a combination of CSA toxity and dehydration, mixed with an long term absorption problem with his gut has contributed to Jack's situation.

...Jack's kidney have been hit pretty good

...we've overshot Jack re-hydration and he's 'wet' now, with the pleural effusion back, imagine that. That and his kidney's taking a hit have made us go through the pee dance again.

...we've consulted with GI and renal docs today.

...we're scared about tomorrow

...Jack got a wagon ride today...and loved it...was his old self again, with his joking around and demands to be pulled everywhere. Coops came for a visit and brightened his day and pulled him around the PICU. Coops visit was only eclipsed by Jack's nannies, at least in bringing smiles to his face. It's so great to see that.

...we're tired and need prayers, especially for tomorrow...no rejection!

Wednesday, June 13, 2007 2:17 AM CDT

Update and new photos added

Okay, here we are 24 and a few hours later and Jack is no longer dry. They have pumped so much fluid into the little guy that he weighs almost two more pounds, which, as I like to do as a means of comparison, is the equivilant of about 16 pounds to me! Unfortunately, we've probably over shot a little and we think he may be fluid over loaded now as he is pulling a little when breathing...the serendipity of balance...in Jack.

Theories for what exactly happened and how to treat are running around like politicians in October; and similarily nothing is really making any sense. For a while we thought it was a CSA toxic issue, which would explain the seizures. His level was 225 on Friday, which is quite high for Jack, but not toxic. We don't know what the level was last night, but a blood draw at 7 AM this morning after missing one dose was 118, pretty much right on. Which doesn't really explain things. So, who really knows???, but it did make sense for a while.

Was it SVT??? (Extremely fast heart beat) After rounds it was "no," as reported by the Medtronic tech who interrogated his pacemaker. This afternoon it was "yes--maybe" as reported by some peds cards folks to Mom. Not really sure what to believe.

Did we just dry him out too much with diuretics? Probably, not really sure if that would cause the seizures though.

Does he have a chronic GI issue that causes slow motility of the gut, causing him to accumulate toxins (e.g. CSA) and fluid and we just over corrected with the metolazone and lasix this weekend? So far this theory hasn't been proven wrong.

So we're still working on things here, but have made the decision...get this...we actually asked to be kept on 5C...that we're not leaving until we get this figured out.

Jack spiked a fever this afternoon.

Maybe just another kinard, but the spector of a heart biopsy to disprove rejection is on the table again.

Had a consultation with a GI resident, and I reiterated the checklist Mama Bear had written down about Celiac Disease. The Resident promised to research, discuss during rounds tomorrow AM and report back with recommendations and a game plan. I'm sure this will involve some type of "panels", which basically means collection of fluids and tissue through painful processes to Jack.

But we have to get this nipped in the bud, otherwise we're failing as parents.

Jack right now is much better. He's breathing better, had a slight relapse into higher heartbeats this afternoon, but otherwise has a good rate and rythm. Oxygen sat's are okay, pressures are good and he's clinically looking fine.

I brought Coops up with me this afternoon as the Parent Bears switched shifts guarding the cave...Coops comes into the room and Jack yells "Coo Coo". Coops says "Hi, Jack". Jack's spoken about a dozen words today, so this was a big event. Jack was happy to see Coops and as they were leaving Coops blew his bro a kiss, Jack responded back with one of his own.

We're tired, the day nurse had to nudge me around 11 this morning as I had fallen asleep in Jack's bed at his feet. I guess both him and I were snoring so loud it was disturbing her. Oh well. I'm not so sure it was me though, as although I'm eight times bigger then him, he can keep his own when it comes to snoring.

Ready for a 15 round bout, we're going to get this conquered this time!



**********************************

Today (I mean yesterday, seeing it's 2:17 a.m.) started out as the beginning of something we've looked forward to for a long time. Coops was starting his Country Day School experience, which he lovingly calls, "Baby Animals" or "Animal School". It's a day care he'll go to twice a week for half days this summer, filled with riding go-carts, pony rides, all kinds of animals to pet, swimming and fun, fun, fun, everything an energetic three year old boy would want. I'm responsible for dropping Coops off and Robin picks him up afterwards. So, I get Cooper up early, get him dressed and off we go. He gets excited as soon as he sees his backpack with the choo-choo is coming along. We get to the school and we're the first one there, but he immediately runs off and starts exploring. I stick around a few minutes to make sure he's okay, but he hardly even notices that I leave as he's too busy pushing a dump truck around the 50 foot sandbox and "riding the Dinosaur."

Robin picks him up and he went swimming, played outside in the playground, painted, petted the animals and explored all over. He was sitting in a little desk waiting for Mom to arrive and all he had the energy left to say was "hi MaMa." All reports are he did great, had fun, was a little too curious and liked to roam around, but had a good time. Coops was hungry and tired afterwards, but a happy kid.

Around 10 A.M. Robin calls me at work saying she talked to the endocrynologist and they were a little worried about Jack's glucose levels were a sign of some trouble. They wanted us to start to monitor his blood sugars. I forgot, you probably don't know what happened on Friday...I bring Jack in for a follow up lab blood draw...everything is normal, but his glucose level is 34...he should be having a seizure and out at that level. I have to rush him back into the ER and get retested...it's a 91, absolutely normal...must be a bad draw. Anyway, Tuesday AM, they reevaluate and want us to start to monitor his sugars just to make sure. I use my lunch hour to run back to the U to get trained on how to prick his finger and use the sugar monitor machine. Off I go, back to work.

I get home around 5ish, everyone is doing great. Momma and Coops are going to run an errand and Jackers and I are going to set up the swimming pool...we have a hot week and summer ahead of us. I'm working outside and in the garage, cursing to myself on how incomplete the instructions are, and Jackers is starting to whin and cry because he doesn't like sitting in his stroller. Calm down Jack, give me a minute. Whine, cry, carry-on. Jack, patience please! Then Jack is quiet. I go over and see him and he's just not looking right. I lift him up and he's limp. I rush him inside to cool off and take his blood pressure. The blood pressure machine measures very normal pressures and heart rates, twice! Jack just isn't responding though. I take his shirt off and can literally see his heart racing in his chest. Shizer!! SVT again?!?

I attempt to break him of it by slapping and throwing water. Jack starts to respond by weakly grabbing my face, the way he does in play all the time. But he just can't and then he starts to get the 1000 mile stare again. Totally limp, a big wet noodle in my arms. I rush him downstairs and pick up the phone...who do I call? I call Robin, but her phone is not responding. I look at Jack and he's presenting the same way he did in May, with the stare and the fast heartbeat. He's pale, except for the flushness in his cheeks from the rapid heartbeat. I count about 200 bpm by my crude measurements. Okay, do I get him in the car and drive or do I call 911?

I call 911.

"I think my son needs an ambulance, he's a three year old, heart transplant receipient who is in SVT." "Do you live at .....?", "yes", "okay, the ambulance is on the way". Two minutes later I hear the garage door go up. I rush over, "Robin, I need you in here right away, Jack's in SVT again and I have an ambulance coming." Robin comes in sees Jack on the floor, shirtless and unresponsive, breathing hard and just not good. We think he may be over heating so we put some ice and water on him.

15 minutes after I called 911 the police arrive with sirens screaming. An officer comes in and starts oxygen and assessing the situation. A firetruck arrives and firemen come in with more equipment. I repeat the above story (less Cooper's part) several times. Then the ambulance and paramedics arrive and we start over. There's a dozen emergency vehicles parked around our house. I carry Jack outside and get in the back of the ambulance. We stay in the back as one of the medics tries to get an IV started. No luck, Robin finally knocks on the doors and says "are you leaving yet?" We start moving, sirens blaring and car's parting like Moses and the Red Sea. I have to give instruction on the best way to get to the U. In the back I'm bouncing back and forth as the medics try to get an IV started. Five attempts, no luck. Okay, we're going to drill a hole in his shin and start an IV directly into his bone marrow. Oh wow. Jack starts going into seizures, with his left side shaking uncontrollably for 10 minutes. He finally gets out of that. His heart rate races to 202, then down to 98...up, down, up, down. The medics starts drilling into his shin...we round a curve onto the Mendota bridge and hit a bump. The drill skips and misses the bone. Forget that. Try another IV stick in the right arm, finally got something . . . start the fluids full bore! We finally arrive at the U around 7 p.m... another incredible hour!!!

We're back in the ER, been there twice before in the past four days (the glucose test and two days prior a scare on a shunt malfunction...turns out he's fine, his ventricals are very narrow, meaning he probably had a headache from hell, but no need for surgery, etc...) Anyway, start the same story and tell the ER docs everything. Get Vascular Access down there and get multiple access into Jack now. Start fluids flowing. EKG. EEG. Blood Gases. Assessments. Morphine. Ativan. Jack calms down a little. Heart still racing close to 200. Left side seizure again. Cardiology paged, waiting for them before they administer adeylenol (sp? - stops the heart, to get him out of the SVT, akin to a hard reboot on a computer, not the best thing for a heart transplanted kid). Cardiology shows up, looks at the EKG EEG etc... and the waves on the monitor, asks questions, assesses, etc..."I'm not convinced he's in SVT". Hold off on the adeylenol.

Mom arrives in the ER, Coops is with the Nanny. Robin arrived in the ER waiting area and asked, "where is my son, Jack?" A young Doogie Houser scruffy chinned security guard said, "maam, you need to calm down." For those of you who know Robin, you know the rest of the story...for those of you who don't...Doogie will never come between a Momma Bear and her cub again.

Anyway, Neuro Surg consulted, shunt series and CT Scan performed, head shunt appears to be fine.

Blood work comes back, electrolytes, sugars, everything is normal. No fevers. Internal temperature is 98.6.

Creatinine was high a few days ago though. CSA was very high a few days ago though. We placed him on another diuretic a few days ago to get rid of the little bit of fluid on his lung though.

Okay, narrow ventricals in the head, creatnine up, CSA up...we think this kid is too dry. Is he dehydrated???

300 cc's of fluid are in him now, from the ambulance ride and the ER time, and with the help of some Ativan and Morphine he's calm. His heartrate is up in the 180's, but steady and pretty good rythum, and starting to come down.

We think he's dry.

Back to 5C, pump fluids into him overnight, observe and reassess tomorrow.

We think he's dry.

Too many diuretics ... difficult balancing act to dry him out to prevent the effusions, but not dry him out and cause these episodes.

So now we're waiting, is he just too dry?

The guilt has already seeped into both of us...we should have been watching his fluids more, should have kept him inside on such a hot day, need to be more proactive on these diuretics and need to make sure we don't have a chronic problem that explains alot of these nuisance issues - Mom has a working theory that is getting some attention now and hopefully will be more addressed sooner now that he's an in-patient.

For now, we just watch, pump in fluids and make sure he's not dry.

Scared, dazed, but still fighting.

Monday, June 4, 2007, 11 PM CST

**New pictures posted on June 4

Casa Corbo has been a pretty busy place lately. We have two, nearly three year-olds, who seem to feel they run the roost. And, well, I guess they do.

We should probably call this place "Casa Constipation" because Coops has a real problem these days. The kid walks around (with a very funny walk) saying “It’s stuck, it’s stuck.” The poor kid is miserable. We’ve tried lots of things. He’s been successful once, but we’re afraid there is much more to come.

The boys have enjoyed spending a lot of time outdoors, either going for walks, which generally entails Cooper pushing or pulling Jack in the wagon or pulling him in the wagon while Cooper is driving the electronic car. Jack loves it when his brother drives him around. The problem is Cooper loves to drive up on the curbs all the time.

We haven’t had any more escapades of Cooper escaping the house, just musical beds. Cooper is very happy to now sleep in his big boy bed, but he wants someone in there with him. So once he wakes up in his own bed, generally at 2 a.m., he comes into Mom and Dad’s room to sleep with them. The big problem is he likes to sleep across the bed and generally has some kind of dream that involves waving his arms around and hitting whatever is around, namely Mom and Dads’ faces.

Cooper is getting ready to start day camp next week at a daycare camp on 7 acres with animals. Those animals won’t know what happened to them. He’s very excited and talks all the time about his “baby animals.” Jack will be taking Cooper’s place in two weeks at preschool. The school won’t know what hit them. We think it will do wonders for Jack since he is quite comfortable at home. He needs to be around more of his peers and not just his “Coo Coo.” Mom is just really hoping school doesn’t call and tell us Jack has been kicked out!

Jack has been feeling really good and making strides on all the fronts. This next year is important to him because he has a lot of ground to cover. He’ll get exposed to more of his peers, new therapy experiences going into the center, and Mom, Dad, and Nanny Twee making him work harder at home. We’re all sure that won’t thrill Jackers. No pain, no gain, is what we try to tell him.

We made a few social trips lately. We spent some time with our friends the Bushaws. Owen and Logan are identical twins who are one year older than Jack and Cooper. Their birthday is three days before Jack and Coops. Their family has had similar mountains to climb with Logan having a heart defect. We met them through Caringbridge and at the hospital. There was some divine intervention with us all meeting at the hospital’s surgical waiting room. We all unexpectantly spent time together in the PICU. The boys had fun playing together, especially Cooper chasing Owen and Logan. Jack kind of hung out on the floor investigating all of the new toys.

Finally, we rounded out last week riding some rides at the Mall of America on Friday. The boys loved it and Jack really liked the “magic school bus.” It was nice because the mall wasn’t crowded and we could let Cooper run and he was in heaven.
So far that’s it for the Corbo Clan update. All is well and we like it that way. Constipation is our big issue right now. That too shall pass (we hope)!

Take a look at some new pictures posted.

TTFN

Monday, May 14, 2007 7:42 AM CDT

Monday Morning

Things are calm and cool in Casa Corbo since the SVT adventure a few days ago.

So calm, Mama and Papa bear decided it was okay to leave the cave and the cubbies with a babysitter and go eat some grapes. Okay, actually it was the Winefest to benefit the U of M's Pediatric Foundation. Jack was one of the honored children last year and we loved the evening so much, we decided to spurge this year and go to it. It was a blast! Drank a lot of wine, had a pretty good dinner, met some great people (including a Tax colleague of mine that I've been waiting to meet for a while, we just happened to be seated next to each other) and actually won a couple of auctions! We now have two more big bottles of wine to match the one we won last year. It was fun seeing all the doc's (we knew far too many of them) out of the scrubs and in prom dresses and tux's. It was fun, for a great cause and good to get out of the house for a while!

Jack is doing fine. He loves being at home and away from the Hospital. Jack's surgeon asked me on Saturday (at the Prom (the Winefest)) in a serious note how is Jack? I said Jack is a very, very naughty boy. Which while a joke at the time, like all good jokes, has an element of truth in it. Jack is very naughty. His greeting to me is a finger up the nose, just because it gets a 'no no' response from me and drives his mother nuts. He loves to get on the floor and roll over and destroy the train set Cooper is playing with. Yesterday, while at S A M S (as Cooper spells everything he sees now), I had both boys side by side in the cart (rather cute). I was busy negotiating the aisles when I heard "no, Jack, ouch". I look down and see Jack ripping Coop's glasses off and laughing while he's doing it. I seperate the combatants. A couple of aisles later, "ouch, ouch", here's Jack knocking his head into Coop's, and laughing while he's doing it. I end up with my hand and arm inbetween the two for the rest of the time in the store. He's naughty! But, doing good. We have follow up labs etc... this week.

Coops doing great. His vocabulary keeps expanding and he's hard to shut up some times. We try to scold him to do something, but he attempts to explain his behavior and plead his case with logical explanations, voice modulation and casual but effective use of his blue eyes and handsome facial expressions. This kid needs to have a career in the public somewhere, he's infectious and you can't help but be swayed by his arguments.

Anyway, just the rantings of a proud parent. We had a good Mother's Day and are now preparing for a long, UNEVENTFUL, summer!

Tuesday, May 8, 2007 8:32 PM CDT

Tuesday PM Update

Dada, Mama, CooCoo and the Roni are all under the same roof tonight!

Our Cardiologist told us last night that we'd be heading home today as long as Jackers' labs came back clean, clear x-ray and no more SVT. Then last night as we were watching the Discovery channel (The Deadliest Catch) a nurse came in and said, we'll probably be pushing to get you out of here as we're full and we need this bed. No complaints from me. I've never seen it so busy in the PICU, 20 out of 22 beds filled. Every bed on the Floor was filled, that's why we stayed on the PICU last night, and 5B and D were busting at the seams also. We were glad to help out and leave by 9AM, a new record, discharged right from the PICU to home!

Jack loved coming home and was just so damn happy to see his house, brother and all his favorite haunts. He skipped his nap for the opportunity to go to the Park with his brother CooCoo. He even had PT this PM and did a great job, no complaining!

Cooper finally felt secure enough to calm down and stop being a naughty boy. He's so sweet, but was very confused and scared from the fireworks of last week that I think he didn't know what to do. He was very happy everyone was home and although I was in a hurry to clean up and try to get at least a half day of work in, he ran up to me and hugged me, squeezing and not letting go for several minutes. I just had to write that down so I'll remember these moments years from now.

Jack's heart was in perfect sinus rhythm when we left. As it was yesterday. His atrial wires were working and pacing the upper chambers. His chest was clean and labs looked good. Explanation for last weeks episode? - not sure, just an SVT fit that caused him to not get enough blood to his head and he fainted. Apparently we did everything right and got him to the ER fast. The new drug, amiodarone,(Trish, you're right, that darn name is hard to stick in my head) is keeping him out of SVT and helping. Jack even managed to gain a couple of ounces of fat while laid up in the Hospital.

Two funny notes on Cooper: He feels the stress and chaos in the household when we have a hospitalization probably as much or more than any of us, and he gets really constipated. So, tonight, he could finally relax and took his stroll behind the couch to finally do his 'business' after three days of holding it. You could just see him relax after that and after the stench left the house. Secondly, when he thought none of us were watching, he ran over and knelt down and kissed Jack twice on the cheeks. It was precious! He's a very sensitive kid.

Things look good, we're praying we can get back into the swing of things here now. God knows we need some peace around here just to get the house cleaned up and ship shape. The chaos of the past couple of weeks, coupled with a very hectically-paced (NO pun intended) life otherwise, have left this place needing some attention inside and out. Small potatoes compared to our boys, though.

Looking forward to Saturday, the Winefest, to help fund the U of M Pediatric Foundation.

As always, thanks for your continued interest, prayers and good will toward our family. We are thankful for the doctors and nurses who have put up with Jack and Cooper's parents over the past couple of years, too.

TTFN

Monday, May 7, 2007 9:54 AM CDT

Monday AM Update!

These boots were made for walking...

Our Cardiologist was out of town for the weekend, so the decision cycle was delayed extra long until her return. We heard via the rumor chain that she was leaning towards biopsy, leaning away from biopsy, etc... all in an effort to prove out rejection. So, having confidence in her care, we quietly waited and just took care of Jackers.

During the weekend Jack got his amino____ drip that over time has caused his heart beat to become more in tune and in a steadier sinus rhythum. His labs continue to look good (his Creatinine is lower than it was last week (good news) but still not in the optimium range yet). X-rays look good and even his BNP has dropped. Echo's show no damage to the heart and no sign of rejection. Jack's mood has been in and out during the weekend, from depression to joy and back and forth again. However, today, he's been in a great mood. When the Cardiologist stepped in to talk to us Jack turned over in bed and looked at her, then with a big grin said "Hi!". He repeated that a couple of times and showed his winning personality. I think this did the trip, as she agreed that considering everything he's doing great and as long as he can handle the amino_____ in an oral form, instead of a IV drip, he should go home and we can skip the biopsy.

So Jack is probably heading home tomorrow.

We have follow ups on his pacemaker function and all the other things going on in his life. So, we're thinking about buying a house on campus because it seems we spend more time here then anywhere (jk). (Although literally I have spent more time and gotten to know this campus better due to Jack's adventures then in all my time going to school here.)

Anyway, things are looking better.

Coops is doing fine, seems to be getting over his cold. When I was home Saturday afternoon as soon as I got him in the door he puked three times on three different spots in the kitchen. I had to clean it up, which is not fun, but he felt so good after upchucking that he wanted to run around and tackle good 'ol dad while he was on his hands and knees mopping up the mess. Lots of fun. He seems to be doing much better now though and returning to his old ways. He constantly asking me or Robin, "where's Jack?", Jack returns the favor with "CooCoo??"

Anyway, thanks to everyone, wanted to remind everyone also that it's National Nursing Week and you should go out and kiss a nurse this week in thanks. We appreciate everything they've done for our little boy(s) and also for putting up with 'slightly' protective parents.

TTFN

Saturday, May 5, 2007 10:13 AM CDT

Update Saturday AM

We've been hanging out in the PICU since the adventures of Thursday PM. Jack's heartbeat has improved, no SVT bouts since then and he goes in and out of regular sinus rythm. His heart still isn't beating the way it should, so we're on a drip of Amio_____ (still can't remember the name--too tired, really) and this seems to be helping over time.

The doc's are not sure what caused all of this and they want to rule out acute rejection. Scary! Whenever we hear this word our own hearts race some. Anyway, the next scariest word is biopsy, which the docs seem to be leaning towards some time Monday. The thought is that this is probably NOT rejection, since his echo, BNP and other labs are all pretty good. However, as Jack's cardiologist says, the biopsy is the gold standard and Jack's a golden boy. We have some questions before we agree to the biopsy so stay tuned.

The good news is it's probably not rejection, the bad news is we don't know what it is and haven't quite corrected the arrythmia. Another theory is that there is scar tissue between the remains of his native heart and the donor one that are interferring with electrical signals from the brain. Correction of this would involve a cathedar procedure to remove the scar tissue. But it's just speculation at this point.

In the mean time, we're just hanging in the PICU.

Coops is at home and we think has been having allergies to the pollen in the air. However, this morning Mommy reported to me that he vomited and just sounds terrible. She's bringing him to the pediatrican this AM to see what's up there. Of course, two minutes after the vomiting, before the mess was cleaned up, Coops was busy playing and runnning around again. This confirms the fact that he's at least 110 percent and he can't be feeling all that bad(Knock on wood.)

Thanks, keep both boys in your prayers please. TTFN.

**************
Thursday night - original message -

I got home about 4:30 yesterday and Robin pulled in the drive way with the boys about the same time. We decided to go for a ride to enjoy the day a little and because Coop's was not feeling all that well - stuffed up head and in a bad mood, we think allergies.

We start driving and are talking, we turn on 35E heading north towards DT St. Paul when Robin says "Todd, is Jack okay?" I turn around and look at him, only two minutes earlier he was teasing Coops and laughing with me, and he's fussing trying to turn around in his car seat to go to sleep. I look at him and he appears to be okay. One more mile down the road... Robin, "Todd are you sure he's okay?". Robin's driving by the way. I look around and he has this 1000 mile stare and just doesn't seem right. I start to yell his name, no response, I start to shake his car seat, no response, just that stare with those big, beautiful blue eyes, I tapped his cheeks, no response, I slap his cheeks, no response, I hit his cheeks (lightly), no response, just that stare. We're starting to get scared. Robin asks should we call an ambulance? I say no, but find a place to pull over, I want to look at him. Robin's too afraid to pull over during rush hour traffic, so I just grab him out of his car seat. This worries Robin even more. Then I take a bottle of water and throw it on his face. No response, just the stare, however he did blink his eyes this time. I tell Robin to drive to Children's Hospital...it's about 3 miles down the road. I unbuckle Jack from the backseat and pull him up on my lap in the front to get a better look at him. This really worries Robin. I slap, tickle, pour water on his face...no response, just the stare. He's getting pale, shallow breathing. Robin keeps asking is he okay? Is he breathing? I look at his chest and see it rising up and down slowly. I continue to repeat what I've been doing, getting little response except him blinking to get the water out of his face. Robin drives like Richard Petti into the ER of Children's St. Paul. I rush out the door holding Jack, open the door into the ER reception area and there, just ready to walk out, is one of Jack's Intensive Care Cardiologist from the U of M. I say her name out of shock, and she looks at me with bewilderment. I say he's having some type of episode. She rushes back into the ER and starts to examine him. She knows Jack, I feel more confident now.

As soon as Jack hits the bed in the ER he 'snaps' out of his trance. A dozen caregivers have blood drawn, do an EKG and Echo and have him hooked up to a monitor within 60 secounds. The Cardiologist and ER doc interview me and start getting info from us and the U on Jack. He's in SVT again . . . we think.

Supraventriculartachycardia...a/k/a
"SVT."

His lower chambers are beating 220 ...

We get a series of x-rays on his head and an CT Scan to make sure his shunt is okay STAT. Okay! Chest looks clear, this must be a cardio problem. The solution? - conversion - electric shock to the heart. Great, this is where we were last year at Easter time. But the Cardiologist says wait, he's really stable now and doing better than when he first arrived. Let's transfer him to the U and his team of doc's there can better care for him. Sign me up. Five minutes later I'm in the ambulance, with Jack in the back. We're talking and singing and telling jokes as if nothing's wrong. Ten minutes later we're back in the PICU at the U and telling the whole story again.

Five minutes later, Nascar Robin, turns up in the PICU.

It's now 6 p.m...what an hour and half!

You may be wondering, what about Coops? He was scared in the van, along with the rest of us! Mommy and Coops came running into the ER in St. Paul, Coops with no shoes on and Mommy wildly dragging him because he's too heavy to carry. We found a volunteer to watch Coops for a while. He loved it and the volunteer found out Cooper likes to press automatic door opener buttons and proceeded to walk around the Hospital opening doors (We hope she didn't quit her volunteer post after that). Robin's friend got a message from Robin "I need you and I'm at Children's St. Paul". She was there in five minutes. Good friend. She took Cooper home and took care of him until Robin got home late after midnight. Thank you, Martha.

After Jack gets to the U we repeat all the tests Children's did, just to ensure his hands and arms are black and blue from needle sticks. You should know also that Jack just happened to be at the U early Thursday AM anyway for an appointment with an Endocrinologist, who ordered a whole batch of blood work and x-rays anyway. So by the time 9 pm rolled around Jack had more than two dozen x-rays, a CT scan, 5 blood draws, 2 echo's and a trip in the ambulance. Poor little guy and good thing we have insurance!

Roni got a dose of ______ (forgot the name)that helped regulate his heart rate, a little Ativan to aleve his anxiety and quickly fell asleep (WE have to figure out a way for them to get some of that for the parents. They need to have it on standby for the Corbo's). He didn't get this drug until around 11 pm, until that time he was going in and out of SVT. Usually he would go in for a minute or two, then pull out and return to normal for 15 minutes. He got his dose, had a big bowel movement and went to sleep. He slept the sleep of the innocent last night and didn't have any more episodes of SVT.

This morning he appears better with a 'more normal' heart beat, but still not normal. He's in better spirits and actually got to have breakfast (he was NPO otherwise).

We're waiting for rounds to see what the next steps are. They have talked about possible rejection, just an idopathic irregular heartbeat that we need to watch for, pacemaker complications, scarring around parts of his heart interrupting the electrical function of the heart or something else. Jack is a complicated kid.

We're waiting and praying.

Saturday, April 28, 2007 3:12 PM CDT

Home Again!

Well we got discharged from the "Floor" this afternoon. We could've (should've) been discharged yesterday, but heck, Jack and I were having so much fun (not) in the Hospital we begged for one more sleep over.

Anyway today I firmly established a noon check out time, with or without doctor's orders. We left at 11:50, imagine that. Kind of like that story of the first car you buy and the salesman asks, "how much can you afford per month?" and you say "$200" and low and behold, you payment is "$199.50. Anyway, things were fine. Today's x-ray showed a clear (almost perfect clear, but much better than Thursday's) chest. Friday's x-ray showed signs of improvement, so today's was just an insurance policy of sorts.

What's causing all of this? We'll apparently parts of Jack's lympth duct system isn't all that we'll connected (on the right side in particular). When he gets stressed out from a cold and get's fluid overloaded (e.g. too much food, water or just can't clear out the mucas in his body fast enough while sick) his heart starts to back up. This in turns causes the main drainage duct of the lymphatic system to back up (apparently they're connected just above the heart.) This in turns increases the internal pressure in the ducts and leakage occurs at certain spots. The leaks pool in the chest cavity under his right lung. This pool decreases the room for his right lung to move and thus makes breathing harder. In addition, the "regurgitation of blood between the top two chambers of the heart" increases during these bouts. This prevents the proper flowage of blood to the lungs to get oxygenated. So, in sum, a partially blocked right lung and increased regurgitation combine to decrease his blood oxygen saturation and he starts to spiral into respiratory distress.

At least that the latest theory.

How do we combat this? When he gets sick we increase the diuretics to keep the fluid off and switch his to the Tolerex (very low fat food)to not add additional fat (thus volume and pressure) into the lymph system.

He'll eventually out grow this.

At least that's the theory so far.

Anyway, it's a nuisance, but nothing to get too alarmed about. His heart is doing pretty good. It is not perfect and we have to continually watch it, but that's okay. One of the doc's reminded us (because we didn't have anything to worry about) that Jack MAY need another transplant sometime in his future because of issues like this. He said "but who knows, that could be 10 - 20 - 30 years from now. We just have to keep watching him closely. A lot of people have these issues and don't know about this (he was contining to opine). It's just with Jack he had a transplanted heart so we keep a close eye on him." Smile, on to the next family to spread the cheer.

Sorry, my sinicism comes through some times. All in all we can't be more thankful. The doc's and nurses we're great and are great.

A couple of other notes...

- Jack's recognition rate by Hospital staff has increased to over 75%. As he demanded we walk (actually I pull) him around the joint at least 12 hours a day. He says "hi" to everyone and in the elevators tell people if we're going "up" or "down". People who I have no idea who they are say "hi Jack, you're getting so big".
- Jack figured out how to operate the electronic controls for the bed. I stepped out of the room today and when I came back in the bed was folded in a V with Jack stuck in the middle and screaming.
- Coops visited Jack yesterday. They were so happy to see each other. Coops even went over and gave him a big wet kiss. Later, Coops was in the play room on 5A with a volunteer watching him. The next thing Mommy saw was Coops walking down the hallway pushing a vacuum cleaner. The volunteer was not to been seen.
- Coops also decided the newly painted walls in Jack's room needed some "pazazz", so he took out the magic marker and tagged the room Corbo Twin style

Mommy and Cooper made it to the Heart Walk today. Jack and I were trying to get discharged in time, but it didn't work out. Mom said it was a perfect day, but a little difficult keeping track of a very excited and very strong toddler. Unfortunately, she was not able to find the Pediatric Heart Transplant team, which is unfortunate since we were both looking forward to catching up with other club members. However, it was fun and we both thank everyone for their support.

We'll that's about it. We go back in a couple of days to follow up on things.

TTFN

Tuesday, April 17, 2007

Five months aint bad!

We made it a full five months without a stay in the Hospital, but here we are, back again. Jack caught a cold from someone else in the family, more likely than not his brother "coo-co". The cold, in Jack fashion, lingered on and on and yesterday we started to notice his breathing was a little more labored. I brought him into the ER last night, x-ray showed just a little spot of fluid on the right side. When we got to the ER his pulse ox was in the high 90'sby the time the x-ray was over it was in the mid eighties. Shizer.

We were encouraged to stay the night and put him on a low flow of oxygen and watch. A morning x-ray showed our nemisis, the effusion, was back. It 'blossumed' over night and although very small and not close to big enough to require a chest tube, its big enough to keep us here as we drain off fluid from his body again.

New SOP for Jack -- anytime he gets a cold or flu, we immediately switch to low fat diet, increased the diuretics and watch his fluid intake. Apparently his physiology is such that a cold is just enough to stretch his lymphatic system to a point that, over time and if not managed, will start to back up and leak. The fluid will then accumulate in his chest cavity and eventually start to effect his breathing.

"A nuisance issue."

Anyway, we're again trying to figure out how to keep functioning, now with a VERY, VERY active toddler at home this is proving to be a little more difficult.

Anyway, I'll pass along additional info as it comes up, but for now it looks like the familiar word - 'pee' - is the name of the game again and we'll be in 5C for a few days.

TTFN
http://heartwalk.kintera.org/twincitiesmn/teamcorbo

Tuesday, March 6, 2007 4:24 PM CST

***NEW PHOTOS AS OF 3.30.07***

End of March already, wow. We’re looking forward to Spring, yeah!, can hardly stand it. It’s been a great month so far. Both boys are just cruising along. Jack continues with his therapies and is slowly gaining weight. We keep saying this, and I continue to believe it, but I think he’s at the edge of a big breakthrough…you know, those big goals, of walking, talking and eating. We continue to see signs and progress and are very optimistic that these things will come fast. (He is talking quite a bit, probably 2-3 months behind Coops, but his vocabulary and grouping words are coming more and more). Earlier this month we had a great clinic visit. Two things we learned though: (1) Ventricle paced hearts are not abnormal, and supposedly the only way they use to do this. So, our Cardiologist wasn’t all that concerned either (remember his atrium wires are dysfunctional now and the pacemaker doc wasn’t concerned) as long as Jacker’s doesn’t have problems and (2) Neoral, Jack’s main anti-rejection drug, has a side effect of making baby’s gums leather like (e.g. like the leather on a saddle of a horse). Which explains the pain and discomfort he has faced cutting these darn things and the frustration we’ve had living with him during this time. We’re taking him to a pediatric dentist, who specializes in transplant kids (oh, the specialist you never knew existed) to have a look-see. I don’t think we have an appointment yet, but hopefully yet this spring. Other than that, Jack is just great!
Cooper continues on the upward trajectory as well. Sentences are coming out of his mouth, he loves to go for bike rides and to the park, in order to climb and run around on things, and loves school. He goes to a preschool twice a week now and loves it. He gets to go for a ride in the mini-van and gets out at the school, after he puts his backpack on. He runs to the teacher, then runs away to the handicapped door opener (he loves to open doors) and rushes into the school. He puts his backpack away and hangs his coat up and sits in his chair, ready for that day’s instruction. However…I asked him the other day how school was and his response was “it sucks”. I asked him again, not sure if that is really what he said, and he repeated it. Wow, we’ve got a road ahead of us…
Doing good, keep us in your prayers as we will you.

TTFN








Coops at pre-school


TTFN

PS – never found the screw!

Wednesday, February 21, 2007 8:14 AM CST

**New photos**

Jack had a busy day yesterday. He was all over the house, into everything, learning to stand and get use to his new walker. His therapist commented on how much stronger and more energy he has. Then at night he had a great time tormenting him brother, Mother and Father. Then, bubbles (bath time) was fun and he almost got all of the water out of the bathtub onto the floor this time. A marked improvement from the day before. He was very happy and then he was very tired. As is his custom, at the most interesting point in a TV show, Jack, while relaxing in his 'chair', pointed up to his bedroom and said "night-night". I scooped him up and started upstairs, then he said, "no Dada" and pointed to the frig. I obliged and went over and got him a little drink to wet his whistle and off to night-night we went. Got him tucked in, he squealed with delight, rolled over, kissed me good night and went to sleep. The sleep of a tired, good boy!

Then the fireworks started.

Coops was downstairs playing and running around. A couple minutes after Jack went down it was time to put Coops to bed. He was having too much fun and ran behind the couch. He picked up a little play screw or nut or something and put it in his mouth. He proceeded to run around the living room with this thing hanging out his mouth, and you guessed it, we finally cornered him and frantically were yelling to get that stupid thing out of his mouth and trying to reach in to yank it out ourselves.

We never saw it leave his mouth.

Did he swallow it?

He appeared to be okay.

But, knowing our luck and with an abundance of caution, we decided to bring him in for an x-ray anyway. I hurried and got my jeans back on and scooped Coop up and off to the Hospital we headed. We're equal opportunity health care consumers, so we decided to try St. Paul kids this time. So, I think by now we have been in every hospital in the Twin Cities with these two. The wait wasn't too long and Coops appeared to be doing fine. But, it was 10 pm by the time we got to see a doc and that is well past Coops bedtime. The crying, yelling and anger were starting to come out. The doc examined Coops and thought it was prudent to get an x-ray to just check it out, however, he suspected that Coop did not swallow anything. Two x-ray tech's, one each for those 400 horse power legs of Coops, and every ounce of my strength on the upper part of his body were required to hold him straight to snap the two x-rays. Three adults and one toddler were sweating after that ordeal. Little Coops was scared, but he recovered quickly as we headed back to the exam room to await the results. Coop occuppied him time by playing with the faucet and washing his hands and couple dozen times. The x-ray's didn't show anything and after Coops drank some milk and the doc was satisfied it went down okay, he sent us home to just keep an eye on him.

After getting into the car and Coop telling me the color of every car in the parking lot, we headed home. It was close to midnight. Coop didn't last past the parking lot and was soon snoring away in the back of the mini-van. We got him home and he slept next to Mommy and Daddy for the peace of mind of all three of us.

Meanwhile, Jack slept, unaware of any of these events...happy that this time the trip to the Hospital wasn't about him. He'll probably listen to Coop tell his tell today and then offer a little perspective.

TTFN

Friday, February 16, 2007 7:50 PM CST

We sadly bid our friend Magda good bye today. The world will miss her as heaven adds a wonderful soul. Magda was a founding member of the pediatric heart transplant club here in Minnesota and showed us strength, optimism and hope in our darkest times. We were lucky enough to see her earlier this week as she prepared for her journey. Similiar to a story Tony Dunge recently conveyed, knowing her and knowing what I know about Heaven, we know she would rather be there, in paradise. We are sorry to see her go and miss her already. Her and Jack had a bond that survives and bridges the gap between Heaven and Earth though.

Good bye our dear friend, please, as you pass through the Pearly Gates, and prepare to greet old friends, please ask for a long, happy life for Jack, Cooper and all the good little boys and girls in your club. Your life here touched so many.

TTFN

Sunday, February 11, 2007 1:24 PM CST

Mid-February and all systems remain GO!; the boys are growing and doing more things.

Jack is inch-crawling, rolling and if he's in the right mood, standing! We have a ways to go, but there's more than hope now, there's proof, that he'll walk soon. The goal is June 26th, 2007. His other therapist all remark that he's progressing, albeit at his own pace, but he's making progress. We saw his developmental neurologist last week and she was thrilled at Jack's progress since last fall. She was unaware of the fireworks of October and November, but nevertheless, she couldn't believe how much stronger, active and alert Jack appeared to her since last August. That's great, we'll take it.

Now, Robin and I purposely try to be optimist, but we're also realist. Jack is still a lot of work . . . and . . . Jack has developed a little attitude. He only works with therapist he likes, when he wants to and in all other aspects of his life he demands things now and does not tolerate anything but immediate response. To top it off, Jack has gotten very use to people moving him and doing things for him. There's a bit of lazy bones in him. Mommy and Daddy are suckers for that smile, and that cry, considering the experiences we have with it, but the kid has to become a little more independent soon. We'll get there, we are optimist after all, but for the love of Mike, the kid is breaking our backs from carrying the big lug around.

(Jack continues to have his naughty boy attitude from time to time also. He beats on his brother (Coop takes it for some reason) and gives his Mother a hard time. Recently Jack was banned from playing with Play-do because of his behavior. This may become a lifetime ban, depending on his rehabilitation.)

Coops continue to excel also. He had an assessment by the school district a couple of weeks ago and overall scored excactly at his chronological age. Some areas he was a little behind, but in others he was at a 4 year old level. Most notably his ABC's, numbers, shapes and colors. Kudo's to Mommy and our Nanny for helping Coops get this down pat. Coop and I practice every night in the bathtub with little sponge letters and numbers. Coops also is starting to sting words together. He wakes up saying 'my name is poocker' or 'where's Jack?' or 'oooh, come on' or 'no way' or 'my brother's name is Jack'. It's fun!

Thinking about sending Coops to the School this summer. He (we) visited during an open house on Friday and he fell in love with it. He got to pet and feed a bunny rabbit (whose name was Jack) and some Guinea Pigs. Looks like a lot of fun and it was hard to keep him still while there. Anyone have any experience with this one?

Things are going fine here. The boys are a lot of work, but about five minutes after they lay down for a nap or 'night-night' time, you start to miss them and their endless demands and chatter. Of course, it's the only subject we talk about when they're sleeping anyway.

TTFN

Sunday, January 28, 2007 9:34 AM CST

Approaching February already...wow...this page on the calendar is the birth month for both Robin and I and big milestones ones they'll be. However, one of the first things you learn when you become a parent is that these things lose importance and relevance, the focus is on the kids as it should be.

So, how are they doing? Jacker is doing great. He continues to progress in all categories: his weight is up and it's good weight, his vocabulary continues to expand, he sleeps through the night (if it's a queen sized bed or larger, and no one bothers him - more on that later), his crawling and just getting around, he can stand now for longer periods of time if we help him get up, he is battling a cold right now, but that hasn't stopped him and he is very naughty. Yes, that's right, Jack is a naughty boy. He never misses an opportunity to roll over and grab Cooper's hair or shirt or anything else loose hanging around his brother. He also likes to get him in trouble by crying foul when Coop finally gets fed up and fights back. Jack also likes to take his toys and throw them everywhere, greatly irritating his mother and father. Oh yeah, if you don't jump at least three feet high and run to his aid at the first cry for help, well, your just a piece of dog do-do then. Yes, Jack is a full fledged two year old boy.

Now, by implication you may think Cooper is an angel. I apologize if I led you astray, for Coop has his moments as well. He loves to rough house and run around, I go to work all the time with battle scars on my face from him scratching or hitting me. He is very physical with everything, except his brother . . . for some reason Coop knows that Jack is not up to par with him physically so he backs off and let's Jack beat on him. If Coop wanted to all he'd have to do is bat Jack away and Jack would tumble into the next room. It must be a twin thing, Coop just knows and is the quintessential gentle giant.

Coop’s progress continues to accelerate as well. He is starting to string words together now. Some of our favorites are “Dada go to work in car”, “My name is Poocer” (close, he just gets the c and p mixed up), “no no Jack” and “I want more milk, please”.

Now, back to Jack…and the bed…I’ve reported in the past that Jack has certain requirements for his bed, sheets and ambient sleeping environment. Remember, he’s two and a half. This young boy has not stopped there with his demands. He saw an opening and is exploiting his parent’s weakness to say no to him. His demands now include the whole bedroom (no one can lay with him, be in the room, enter the room or think about the room), no interruptions in the master’s sleeping chambers while the prince is asleep, a certain CD for background music, set at just the right volume level and blankets laid out in just the right order and mix. Failure to comply will result in violent and uncontrolled outbursts for extended periods of time. We’ve tried to outlast him, but have not been able to. We’ve come to realize that if we give him everything he demands, in return we get uninterrupted sleep, we’re coming out ahead on that quid pro quo.

That’s about it for now, Jack’s next clinic visit is the end of February. We’re busy writing down questions for that visit now, but for the most part the kid is doing great.

TTFN

Saturday, January 13, 2007 7:41 AM CST

**New photos**

Wow, 2007 is a couple of weeks old already...I wonder how many times I've written 2006 instead on things???

Things remain status quo here at the ranch...which is good news. Jack has steadily been weaning off the Tolerex back to his Pedisure diet. We're about a 1/3 2/3 mixture now. The doc's gave us the go ahead to go to full strength Pedisure, but knowing our Jackers we wanted to go slow and not change too many things at once. It's been working so far, he's over the 23 pound mark and it's GOOD weight this time. The most he's ever weighed was over 25 pounds, but there were at least 4 pounds of bad fluid inside of him, so this is much better.

Jack has not only been getting bigger (and I'm proud to say he doesn't have stick arms and legs anymore, if you look really close you'll see meat and fat hanging from those bones!) he's been stronger than we've seen before. He's crawling, still the inch worm type, but every now and then up on all fours. I came home the other day to the screams of dada and daddy, Cooper tackled me at the door and I carried him in looking for Jack. Jack's happily screaming Dada and I went into the family room to look for him...he's not there...hide and seek? I don't know but Jack's in the kitchen next door, crawling around exploring and happy as a lark. Of course, with exploring comes boo-boos, as he's gotten his fingers caught in cabinet doors and other things from time to time.

Jack's words and letters, social skills and every other thing is starting to open up as well. He's even sleeping from 8 to 7 every day (or mostly).

Coops is doing good also. He's been pretty good at keeping his "magic glasses" on too. A few times they been somersaulting in the air as he gets mad and it's really dramatic to throw his glasses. They are "magic" because the are not broken yet...

No one in the house has been sick yet this winter, yeah! Coops is talking to us about everything until we get tired of it. Please, some quiet! Didn't think I'd be saying that a year and some months ago. Coops has taken a few tests lately and has really erased all the gaps that a VLWP (Very Low Weight Preemie) would have. He was in the two pound club at birth, so studies have shown...oh shoot, we've heard that crap before...Coops has shown them and is doing great. As with all of us, he has some points he has to work on, but for the most part he is doing what he should at 2 1/2. Even...get this...especially any of the ECFE families we have met...Mommy brought Coops to school the other day and Cooper sat still in the circle and sang, played games and was the best teacher's helper imaginable! Cooper has even progressed ahead in some of his skills, namely he is such a visual learner that he knows ABC's in and out of sequence (has a little trouble with Y and W) and is frequently telling us the letters in signs he sees.

Things are fine here. We're snuggled down for the winter, trying to keep cabin fever from hitting, but doing all right.

TTFN

p.s. Jack's next clinic visit is in early Feb, so we'll confirm then that all his feeding, et. al., is a-ok.

December 29, 2006, 5:30 PM CST

**New photos**

Update from Casa Corbo...

Well, Santa survived his trip down the Corbo chimney and just in time to leave plenty of presents for Jack & Cooper. There appears to be a "CARS" theme this year. We have cars everyway and every single one of them make some kind of annoying noise. Mama is tempted to open the door and allow the cars to keep on movin'...

The boys didn't really understand the concept of Christmas, but they did understand something different was going on and they were having a ball. They also were wrestling over the cars which was entertaining to watch.

Cooper got his new "magic glasses." Yes, his beautfiul blue eyes are now magnified for the world to enjoy. He looks like a cross between Harry Potter (only with a very understated frame color) and one of the bugs on the Miss Spider show. He looks awfully cute, but the glass or plastic is pretty thick in the middle, magnifying his eyes. He's been such a good boy about keeping them on. They are his "magic glasses" and that seems to help. Maybe he really can see better with them on and that's why it's working. We're still not convinced he was having any trouble at all, so who knows... Jack's just glad for someone else to get that kind of attention.

Jack has been very content and very happy these past days. I guess this low-fat diet seems to make him feel a lot better. I suppose a lot less fluid on your body does make you feel better. He's been much stronger and doing a lot more movement, so we hope it keeps up. He also has decided to forget his toddler bed and move right on up to a Queen size bed. He has taken over the guest room bed and he does not want to share the bed with anyone! No more crib mattresses for him. Now Cooper is wanting to sleep in the big boy bed. Once they felt the comfort of Stearns and Foster, there was no going back. We are still able to appease Cooper into the crib. It's only a matter of time...

We are attempting the big boy potty with Cooper. He likes sitting on it and has actually used it once for a couple of drips. We're just getting him used to the concept. He's so stubborn though, he will do it when HE wants to and there is no one who is going to call it any other way. He oftens comes up and points to his behind and says "I poopied." But anyone who knows Cooper knows that when he actually has pooped, you can smell it a block away. I think he just likes making you think he pooped!

Jack has started saying he poopied in his pants too. Always after the fact, though. We cherish the day we are out of diapers in this household. What will we do with the windfall of money then?

We're looking forward to a healthy 2007 with no overnight stays at the Fairview Inn. We wish everyone a safe and fun-filled New Year's Eve holiday and a healthy, Happy New Year!!

The Corbo’s
Todd, Robin, Jack & Cooper

Friday, December 8, 2006 10:03 PM CST

Tonight we celebrated Ellis' life with his Mom and Dad. We were not exactly looking forward to this as we drove to the church. It was very difficult as we walked in and saw the memorials, one had Ellis and Jack's story on the Heartwalk we all participated in last February displayed. We lost it, as we realized we were looking through the looking glass...

I'm glad we went though. The four of us embraced and sobbed . . . we could feel their strength and sorrow. They are special people and great parents, and we celebrate the life of their son. Melissa's parting words to us were Jack is getting stronger and will lead a normal life, and they look forward to someday watching him walk down the aisle getting his high school diploma...celebrating the milestones of life.

Where do you find such people?...empathy during such a personal time.

Robin and I sat in the church reflecting, watching the pictures of this most brave, strong child. To say he is an inspriation doesn't do his life justice, he is more than that. Most of all he was a little boy, loved by his parents, who loved them back, who was stuck in a situation he didn't ask for and just happened to touch the souls of those around him...including my son, who is also just a little boy, loved by his parents, who loves us back, but is stuck in a situation he didn't ask for either.

It would be easy for these little guys to develop attitudes that come so easy for us cynical adults. But both of them are the most happy, loving kids you will ever be lucky enough to meet. And we just happen to love them.

Heaven is richer today, as Ellis plays with his Donor and begins to help their parents find solace and comfort. I'm sure they would agree that while it's hard for us left here to understand, we really should be celebrating their lives instead.

Monday, December 4, 2006 10:43 PM CST

Update

We cannot find words tonight to express the sorrow in losing our friend Ellis. There are many tears in this household tonight. May God grant Melissa and Sam respite and comfort in the days ahead.

TTFN

Thursday, November 30, 2006 1:36 AM CST

Update

We've been home a week now from our latest adventure in the PICU. Things have settled in pretty nicely. Thanksgiving was fun with family and spending time with them, the boys had lots of people showering attention all over...they loved it.

Since then, the House has started to return to its normal activity and rhythm...which is precisely what the boys needed. We are now going to bed at our 'normal' time (8ish for the boys and soon thereafter for Daddy!) and are pretty much sleeping through the night. Jack has developed a nasty butt rash that has lingered for a while. We actually think this was the cause of the last ER trip and shunt scare now. However, this too is starting to show signs of recovery and we certainly do have the pain managed now.

We have also noticed significant behavioral changes in Jackers. First, Jack has started to eat more from the mouth! (even for his speech therapist!) Second, Jack has started to crawl, on all fours and with his butt in the air! (not perfect form, but it's a start). Third, Jack is starting to talk more. Fourth, Jack is sitting up more and enjoying it (again, even when the PT and OT are around). Fifth, Jack and Cooper are starting to interact more...which is so fun to watch. I missed it, but Mommy told me that today Coops came down the stairs and started to make a 'ppppp' sound from his mouth (he heard it from his favorite movie "Cars"). Jack thought this was beyond hysterical and started to laugh...then he started to really laugh as Cooper continued...the double over, belly grabbing, hickup producing, cheeks hurt afterwards type of laugh. He then tried it himself and Coops started the same thing. Of course this type of entertainment is priceless to Mommy, the Nanny and the Therapist.

So things are better here.

I know...it's quarter to two and I'm writing again...Jack had a wet diaper and yelled until I changed it. Unfortunately, it woke me up and energized me, so here I am.

Sometimes it has to be 2 in the morning...to remind you and to put into perspective things in life...but as I looked at Jack sleeping just now I am not afraid to think of the future anymore! We are blessed with these two boys! They drive us nuts, tire us out, make us feel like used tires every night, but I wouldn't have life any other way. I haven't yet had that knock you down moment the cartwheel girl's mom told us about long ago, but I think I finally feel that tomorrow will only be better.

I pray so.

Friday, November 24, 2006 7:20 AM CST

Black Friday Update

God has blessed our family. We were home celebrating it for the second year in a row...together!!! Since the boys were born we have missed more than half of the holidays due to Jack's adventures (Cooper's too in the beginning). So, with two holidays in a row...wow...that's go to be a sign of things to come.

Jack is doing fine. His butt problem is still there, but once identified we are on top of it. He still has a slight attitude about things, but he's entitled being Jack and being two.

Cooper's fine also, loving all the attention of company during the holidays. After the Thanksgiving feast he has been pretty badly stopped up inside (the exact opposite issue as his brother). So bad that he had made him cry uncontrollably for a couple of hours last night. I carried him around trying to get him to calm down and finally I had to sit down on the edge of my bed. He saw his opening and wiggled and arched his way free from my arms and head first into the pillow. He curled up in the fetal position and said night-night. I thought, fine, and curled up next to him with my arm over his body. We snuggled and fell asleep. I awoke a few hours later with Mommy sleeping on her side and Jack in his big boy bed next to my side. The whole family in one room the holdiays. Thankfulness.

Hope everyone had a good thanksgiving. It's almost cliche and utterly inadequate, but we are so thankful for the many thoughts, prayers, words through the years. It's sustained us many times. We are also equally thankful for the many caregivers of our boys, a debt of gratitude we cannot pay. Thank you all.

Thursday, November 23, 2006 1:51 AM CST

Update

I know it's 2AM and I'm at HOME and I'm Up! Dammit, this is only suppose to be happening in the PICU!!

Here's the update...

Jackers, Nana and Mommy made it home at about 2:30 yesterday afternoon. Jack had a great night and a good CT scan in the morning, so no need to stick around. Mommy dropped her boy off at the house and beat feet to the liquor store and the honey-baked ham store (oh how I love the Holidays!). Jack took a nap and was doing just great as relatives from Michigan arrived. Cooper was so excited to see them, he just tore up the house showing off all his tricks.

We sat down, had a great dinner and with a full stomach and a little of that booze in us, we decided it was time to give the boys a bath and relax. We earned a little R&R right?

Well, Cooper had a 'livin fit' after his bath when he found out that he no longer is entitled to a baba with Vanilla Pedisure in it. Just plain milk isn't just plain good enough Mom and Dad. This fit lasted close to midnight, until he finally accepted the fact that cow milk isn't all that bad. (To be fair, he's two and was really excited with the company, so I'm sure his little system was kicked into overdrive and it was hard for him to settle down. He's a great kid though, he kept all of us entertained all night long and has this infectious laugh that puts a smile on your face no matter what's going on.)

Now, I could be off a little on my time though, because Jack was having another one of his holy fits at the same time Coop was having his. We had a choir of crying going on. Jack's fit was very similiar to the ones that lead to us taking him to the ER two nights ago, stat CT scans a few nights before that and so on and so on. Great, the doc's just sent us home saying he was fine but the way he was acting was an obvious sign of pain. This lasted well after midnight. Mom and Dad were ready to check out and hit the booze cabinet.

It was my turn to hold him and walk back and forth to try and comfort the little tyke. As I picked him up I grabbed his butt to get a good grip. When I did this he screamed bloody murder and bit my finger (the nail is black and blue now). Oh...maybe this is an ass thing. We took the diapee off and sure enough it was raw and bleeding in some spots. After a short conversation we think, with our in depth medical knowledge, that the stress steroids, the antibiotics, the new formula and the new Huggy brand wipes (also a low grade sand paper) all combined to give him once sore and raw butt.

We cleaned him up and then Mommy began to blow on his little White Castle buns. I took over a minute later. The drying effect of this caused Jack to stop whimpering and to have the biggest grin possible. Okay, all those bad thoughts and grabbing the keys to the liquor cabinet disappeared with that grin. We greased his buns up and put about a pound of powder down there. Jack fell asleep within 10 minutes...a very restful, peaceful sleep.

To think that some of these issues and trips to the ER and highly paid and trained docs and two ICU veteran parents racked their brains for days and in the end it was just a simple sore butt!

The fact is Jack is so damn complicated that sometimes the simple stuff gets overlooked.

There's probably a lesson about life somewhere in there.

Maybe that's a good way to go into Thanksgiving. It's not the fact that the meal must be perfect in every detail. Or that the table must be decorated just right. It's really just the fact that you're there with people you love, if not physically then always at least in spirit.

We have made some great friends in this recent Jack adventure. They are still at the PICU helping their little guys get better. Pray for them as you're eating your turkey today, so that they too can have their whole families back home soon...safe and sound.

TTFN

Wednesday, November 22, 2006 6:30 PM CST

Update - 6:30 P.M.

We left the joint at around 12:30 p.m. today!! After "observing" Jack all day and night, everyone decided he must have had some bug or other typical kid issue. Jack was thrilled to leave. Mommy told the doctors not to dilly dally because she and Jack were headed to the liquor store!

Jack is safe and sound and back in the company of his brother. We will enjoy Thanksgiving at home and the boys will share the wishbone. And Mom and Dad will enjoy the liquor store trip.

Happy Thanksgiving!!

"Back in the Joint"

Saturday, what a day, everyone was feeling good and everyone was home! We had fun and actually started to dig out from under the pile of backed up 'stuff' due to spending the previous 15 days in the Hospital.

Sunday, started out okay, but ended up horrible with Jack arching, crying, pointing, yelling at the top of his lungs and NOT SLEEPING. Actually, he had some of this Saturday night. At 3 A.M., after fighting with Roni for a couple of hours I brought him downstairs to watch a video ('CARS', actually a really good show). He loved it and combined with my rocking him he fell asleep, finally...for an hour...then crying, arching, pointing aimlessly, etc...

Shizer! The shunt again!

Load Jack up into the minivan and off to the U we go. I get there about 7 AM this morning, the only patient in the E.R. Two minutes later there are ten other patients, some with gun wounds, some crying because their dog got shot, etc...one of the scenes from the TV show "ER." Consequently, we get put at the back of the triage list.

Around 10 ish, I finally am given a mickey and slip it to Jack. A few minutes later I walk (knowing the way myself) to the Ped's CT Scan and X-ray and complete the series. I get back to the ER to help insert an IV into Jack. I shooed the nurse away because I didn't think she had the skill to stick Jack (I do this often, and have a few favorite 'pokers' around the Joint). So they call vascular access. I don't know if this was an improvement, because they popped an IV -- blood everywhere -- then got the other one started and succeeded in leaking blood all over the place. It looked like a meat packers house in the room after this ordeal.

Jack, now exhausted from fighting the IV stick and barely sleeping in over a day, finally went to sleep...only to be awakened a few minutes later by the neurosurg docs. They are a great bunch of folks ... really ... but they travel in packs and tend to demand bright lights on their subject when examining it. Therefore, Jackers was awakened; however, instead of showing these docs his rotten side, he was all smiles and giggles. This impression was the exact opposite of what the chief neurosurg doc said the CT scan looked like -- enlarged ventricals. However, she said we need to wait for her boss to read it. A few minutes later one of the neurosurg residents came back in and said the CT scan was inconclusive, but that they wanted to admit Jack for observation and prepare for a possible surgery (e.g. no food and the IV). I was given the impression surgery was coming and started to prepare myself and everyone else for this.

Preparation in this case meant finding an outlet for the frustration of this whole stinkin ordeal ... a literal scene from the movie "Ground Hog Day" is what I felt like we were/are trapped in.

I calmed down and by noon we were transferred up to 5A (Mommy and Grandma had arrived in the meantime to help with the vigil). One of the neurosurg docs 'pumped' Jack's shunt (basically pushed on his head where the shunt is)while visiting him and thought that this may clear things up, since the 'pump' was relatively easy and Jack didn't seem to mind (WE need to learn how to do this). So, knowing this and the fact that clinically he was acting more like himself, the prospect of a surgery started to diminish around 2 ish. At 3 ish, I was half asleep on the bed next to Jack and was listening to Mommy talk with a neurosurg doc about 'no surgery'...'observe tonight'...'start to feed'. That was all I needed to hear.

So, Grandma is watching Jack in 5A tonight, I'm back home with Coops and we're going to hopefully avoid the surgery by the means of a little pump to the head and bring Jack home tomorrow. Just in time for Turkey Day.

We did get to see our friends over in 5C though, so that was a positive. Go Ellis! Go Logan!

I cannot tell you in words the frustration Mommy and I felt at times last night. At 8 this morning I thought for sure we were headed for a sixth procedure within 3 weeks, with the accompaning PICU and Floor time and more and more crap backing up in our 'real life'. I know this is just moaning and complaining, but this stinkin' November ordeal has had a life of its own. One of the Neuro surg docs told Mommy that the storm is probably over. Mommy told her it better be because otherwise she would need a padded room and Jack will need a new set of parents. The top "Dog" neurosurgeon called Mommy on the phone and they talked about this persistent issue and he said it could have to do with Jack's lowfat diet and the fluid issue and the diuretics being used to get the fluid around his lung gone. These drugs could have caused extra debris in his spinal fluid. So hopefully we get this lowfat diet over with and his lymphatic system problem taken care of and this problem goes away! Please pray this works! Little Jack is so sick of the hospital and it's the worst place to try to stay healthy!

"Hmmm... let's see" (Coop's favorite new saying) we are just hanging out tonight hoping to catch a little shut eye, keep the fires low tomorrow in our real lives and get Jack home in time for the Holiday. And most importantly, avoid another surgery.

We'll have (already do) have a lot to be Thankful for! Please hugs your kids and be thankful you are not in the hospital. Please pray for all those who have to spend the holiday season there!

Friday, November 17, 2006 9:48 PM CST

Update

Jack has left the building...

I woke up this morning (actually refreshed because Jack slept through the night as well) and said it's time to go home. Jack woke up early also and we started to play. I talked to Mommy and we all agreed, it's time to go home. So, we proceeded to pack the room up and start the advocating to get released, paroled, or whatever you want to call it.

Okay, I think you can go home shouted the docs back to us but first you have to (1) have a CT scan to show us Jack's brain in better and his ventricals are back to normal, (2) have a blood draw to check everything out there, (3) do an xray to make sure there is no more effusion, (4) get the PICC line removed and then (5) wait around a couple of hours as we 'round' and decide your fate. Then, if everything is okay, then, we'll have you wait around a couple more hours while we write the discharge orders.

Okay, for rookies that process takes until 9 pm.

Jack has given us the opportunity in this arena to excel. We've cut that down to 'being at home' by noon with a stop at Hardees on the way back.

Here's how you do it. You scoop Jackers up and run down to the CT Scan and get the work done. You move faster when you don't have a nurse and patient transport along for the ride. Also, it helps when your shoes have a memory of the route because it's taken it so many times. I had this done before the nurse knew I left 5A. Xray, you stand around outside the door early in the AM and talk the tech into getting you done first, before the other 6000 pictures they have to take. Blood draw - PICC lines do have an advantage. Removing the PICC line, well, I helped out by pinning Jack down and Robin handed her the instruments as we pulled it out. We stopped being skeemish on this stuff a long time ago. Rounds -- advocate, it's commonly called the pre-sale by visiting all decision makers proactively and paving the way. Decisions were made. Also, just having the attitude that I'm leaving no matter what helps...code pink or not. The discharge papers...well, we left without them. Fortunately, I felt bad about that and after packing the minivan up with Jackers and the 6 tons of crap he had in his room, I went back up and got the orders. (I had my own car there anyway...and drive faster than Robin.)

I opened the door at noon at our house. Jackers was rolling around on the floor with a huge smile on his face.

On the serious side...he's doing great. Head shunt is working, no effusion, and tolerating the Tolerex food. He's skinny, so skinny we're considering giving him a butt transplant because he has lost his along the way. (I know I have a little bit I could donate.) But it's so great to see him smile, so happy to be here.

We missed saying good bye to Ellis' and Logan's families though. Just bad timing I guess. Even though we're not there, we're still there with you though. Keep on keeping on and all of our prayers will be answered.

TTFN

Friday, November 17, 2006 6:01 AM CST

Update

Yesterday morning we were on the cusp of another shunt revision...another brain surgery. Mommy got here about 9 and I went to work to get a couple of missions accomplished and keep the fires down. At 1 p.m. I left to come back to the U, the surgery was still scheduled for 3, but no one was willing to say which way we were going. In talking to Mommy she seemed optimistic though that the 'head tap' from the night before had cleared things out and the shunt was starting to work. I got here around 1:30 and I was starting to see the veil of pessimism lift from my eyes also. We brought Jack to do another CT Scan at 2 (we know the way, so we just carted him down there ourselves - kind of scary when we know the way around the Hospital and are not only given permission to go unaccompanied, but are often stopped by strangers for directions). We did the scan and both of us were feeling that the 3 o'clock surgery wasn't going to happen just by seeing his behavior.

Jack was sitting up, looking around and acting more like himself, except he was pale and dogged tired. We got him into his bed at 3 and waited for the neurosurg folks to show up to tell us the game plan. A few minutes later they did and said the surg was off. His ventricals in his brain were showing signs of recovering and it looks like the shunt is doing it's job. Yeah!!!

That means no surgery, start feeding again, we can all get some sleep and our Jackers should be back again. All these things started in their own time. Jack feel asleep at 3:15 and did not move until 7 last night, he was just exhausted. At 7 he woke up and was back to his mischievious self. He took all the toys in his bed and threw them on the floor (we treat the floor as poison in the Hospital, meaning I had to clean them all - he thinks it's funny to see me running around trying to catch them before they hit the floor and then cleaning everything with wipes. I got in bed with him and he rolls over and grabs my nose, pokes my eyes, fish-hooks my mouth, pulls my hair and poops in his pants. All those things a scrappy street fighter does (okay, maybe not the last one, but our Jack is back!)

This burst of energy lasted until 9ish, at which time he was exhausted again (no real sleep in 2 days). Dad was tired too and I'm sure our room just vibrated from the snoring from the two of us until now. I woke up a couple of times to check on Jack and change diapers, but beyound that it was a great night.

Optimism has returned.

Rumors of an early parole board meeting are in the air.

Food is back in his belly.

The air is clean.

The water pure.

Peace breaks out.

Sorry, got carried away. But things are pointed in the right direction today. In a few minutes I'm going to get ready for work and on my way to the car...I'm going to take the first load of stuff ... meaning I don't need it here in the Hospital room anymore!!!

TTFN

P.S. Prayers are still needed, but the past ones have worked miracles for Jack's friends Ellis, Logan and Skylie. The last couple of weeks has been surreal in some ways, as many of the 'heart' families we have gotten to know via these caringbridge websites have all been hospitalized at the same time. We've made good friends with their families and continue to ask for prayers for their little fighters. All of them have had these prayers answered as their conditions have improved. Please keep 'em coming!

Thursday, November 16, 2006 2:34 AM CST

Update...

Okay, it's been another roller coaster here in the Joint. Jack started by getting zero sleep on Tuesday night. This was following a beautiful day where he roamed the Hospital in his little red car and made all kinds of friends. Then all day Wednesday he was besides himself, it looked like a repeat of shunt revision #2 last week. I left work early again to come in and help out, we got a stat CT scan at about 6 pm Wednesday night and his ventricals are enlarged again. The Neurosurgical team 'tapped' into his shunt by his bedside a few minutes later and noticed a blockage, but then thought they were able to 'flush' it out. Jack's behavior got better and he drifted off to sleep, the kid is exhausted. He awoke around midnight and this whole affair started again. I just got back from another stat CT Scan and it appears there was no change from a few hours ago. I think the game plan is to wait until 6 AM and then reevaulate things again.

We've been down this road and I think we're heading for a third revision, the THIRD!!!! brain surgery in the last two weeks.

This of course puts his 'drying out and feeding' regime on hold and prolongs our sentence here in the Joint.

Poor Jackers is obviously in pain, tired and hungry. The kid looks like a little scarecrow he's so thin now. Me and Mom are besides ourselves with frustration at every level. When you're here you need to be here and you're thankful you're here, but you don't want to be here because it's a time sink and everything else just stops and get's piled up behind you. The frustration is you can't do anything about it, you're a bystander for the most part just watching, and for us Type A people it's enough to push you over the edge. Two weeks ago yesterday as I was driving Jackers into the ER about this time I was fearful we were headed into another one of these things, it looks like we're here.

Jack's issues aren't as serious as some of his in the past. So when put into perspective your blood pressure goes down. However, it's just the fact that he's logged so many days here and these 'nuisance' issues just keep coming up. He deserves a loooong break from this stuff.

As a neurologist recently told us, we really won't see Jack blossom until he is away from the Hospital for a long stretch. We're still waiting for that to happen.

Sorry to sound gloomy, in perspective we shouldn't be. It's the totality of everything that suppressed everything inside of you and you just want to explode to release some of the energy. It's stupid things like trying to arrange to have clothing here to go to work, that are just those little irritants that push you over.

TTFN

Tuesday, November 14, 2006 - 10:00 a.m. CST

**SPECIAL PRAYERS NEEDED** Our friend, Ellis Bergstrom, is in need of prayer warriors tonight. His parents have been told he is critical and tonight will be tough. Ellis is recovering from a heart transplant that has required him to climb mountains. Please pray for his family. This very special family has endured more in a short time than most ever will in a lifetime.

Also, please pray for Ellis's cousin, Logan. He too, is in need of his kidneys to start working properly. They are a family of fighters and survivors, but are certainly worthy of your thoughts and prayers.

Please hug your children tonight with the thought of these families and the battles they are fighting all in the name of love for their children.
*************************************

We meet with the Parole Board at the end of the week!

Yes, it looks as if we are here until at least the end of the week. It seems that the doctors want Jackers to start eating and get back up to his normal amount of caloric intake before they will spring him from here. He has lost a lot of weight and now they want to put it back on him and watch him do it. They are going to try a special fat to add to the food to help him pack on calories, but it's the kind of medium chain fat that his lymph system can process, yet it can still continuing healing. He will be on a special fat diet for about 6 weeks and then he can hopefully resume eating normal food and drink his Pediasure.

Since Jack is basically on house arrest, there is no reason he needs to stay in his room now. He still has his wagon and has also graduated to a car when he's off of his IV. He takes 6 hours off of the IV so we don't have to worry about the pump. He really thinks he's something else by going all over the hospital and through the tunnels. The Telemetry Department finally just ok'd Jack not being monitored because we weren't following the rules anyway, so I think they gave in. Sorry, guys. You can't really reason with a determined 2 year-old who's under house arrest, can you?

It's been nice for him to get out of his room. So nice that he refuses to go back for most of the day. When we come around to the hallway where his room is, he just starts screaming until you pass up his room. Let's just say everyone in the hospital officially knows Jack now.

We are delighted to have such freedom in the hospital meaning that we are not needing a lot of attention. We have certainly had our share of emergent situations here. It's nice to see the world from the other side. Some of our friends are not so fortunate right now. Please keep Ellis and his cousin, Logan, in your thoughts. They can use some prayer power to nurse them back to health.

The picture of Jack in his car says it all. That's him in the hospital's new lobby "socializing."

Coops is holding his own at home. He still doesn't understand what's going on and ocassionally needs to sleep with his Mommy, but he's still smiling! His new thing is putting his index finger on his chin, looking up and saying, "Hmmm, let's see..." Very cute. He misses his brother. We'll see what happens when they are reunited. They'll both be fighting for attention!

That's it from the 5th floor of Fairview University's Children's Hospital.

TTFN

Thursday, November 9, 2006 8:29 PM CST

Update...Thursday PM

Still at the U...

Mrs. Bear added some comments to the beginning of the post from yesterday that are right on...talk about trees and forests...

Anyway, Jackers had great news on his heart from the biopsy and cath...a big fat ZERO rejection and good internal heart pressures. That's great news and I'll take it!!!

Okay, so no explanation for this cyrothorax though. As a matter of fact, Jack developed another effusion this morning as I was starting to pack up the room to head home. His belly got very big, full of gas. An x-ray and half hour later Mrs. Bear calls me at work (I had to go to work, I was just too frustrated to stay there and find out the results) and says the effusion was confirmed. No chest tube this time, just some more diretics and get him dryed out. This time we're serious, dry, dry, dry...get those lymph ducts to heal themselves and get this problem over with. That means no food in Jack's tummy for a while.

The Bears graduated from PICC line class this morning, so we are ready to take care of Jackers at home with this thing.

Jack's spirits are much better. He is starting to talk and interact more, coming closer to our Jack. We think he's a little mad at us for bringing him here, but someday, when he's holding his baby, he'll understand. I hope we're still around that day, because I plan on going to his house and throwing everything on the floor, soil my diaper, break anything and everything not tied down or hidden and then demanded to have my every need attended to right away!

Sorry, just a little triade, and the Vicodin they gave me in the ER yesterday for the pain in the back is really making me feel good. This is some groovy stuff.

Anyway, rocking steady at the Floor tonight. Hope to dry Jack out, get his belly less bloated and maybe head home tomorrow.

Say a prayer for Logan tonight, another friend Jack has made in our travels to the U of M Children's Hospital. He is also a beautiful twin little boy with a heart issue and needs everyone in his corner (and his parents).

Maybe someday, in about 20 years, when all of our kids are grown and taking care of themselves, us parents can get together and relax, unwind from the trials of kids with heart conditions and life in the ICU. It'll be fun and I'm sure there will be some spirits consumed in the process.

TTFN

Wednesday, November 8, 2006 9:17 PM CST

NOTE**

Did we forget to mention that Jack's heart function is very, very good? His annual heart cath and biopsy showed very good results and zero rejection! His transplant cardiologist says she is "very happy." In the midst of the ginormous headache issues, the heart of the matter got lost!

We think we are going home tomorrow. Or at least Mama Bear said she's putting the cubby in the car with the IV pole hanging out the window if she has to, but it's time to go. I guess we all prefer to leave without the assitance of security. By the way, there were two security guards posted down the hall from us, so Mama Bear casually asked the kind nurse, "Is there something you want to tell me?" The kind nurse responded that it had nothing to do with Mama Bear...

There's a reason why I shouldn't post stuff at 4 in the morning...what a mess, hope you understand what I was attempting to state...

Here's the deal, Jack had a rather quick and painful shunt malfunction yesterday. It was probably going on for two days, but the morphine haze he's been in hid it for a day. The doc's continued to think it was more feeding and pain related yesterday, until the parents became increasingly voiceful and demanded action. Note to doc's...listen to the parents...they know your patients better than you ever will!

But not to be too hard on them, once pointed in the right direction they get things done and fixed our boy up.

Jack 3rd shunt revision is helping. His eyes are still crossed sometimes, but the pain that he was in has all but disappeared. He is even starting to make quack-quack sounds when asked what a duck says, and is telling me a story as we speak (I have no idea about what). So our little cub is coming back to us. We expect his eyes to return to normal soon as the pressure in the head equalizes and the drugs get metabolized. He also ripped the bandages off of his head because they were blocking his view. That's a good sign.

That was scariest thing about yesterday. We looked into his eyes and that was not our son. It was someone else. Where did he go? He didn't even recognize us or respond to our voice. His actions were that he didn't even know we were there. Utter helplessness is what we felt.

Things are better now. We are of course tired, but that's a small price to pay.

I made it home to see our Cooper Cubby and he is doing fine. His schedule is all messed up, but he's doing okay. When I walked in today he saw me, threw his toys to the ground, said Dada and walked over to me. I bent down and he hugged me and DID NOT LET GO for about 3 minutes. Which if you know Coop's, that is forever to hold his attention on anything. Again, he's our therapy for what happens to Jackers. He misses his brother dearly, or I should say he misses 'Ack', he can't quite get the 'J' out yet. That's okay though, Jack calls Cooper 'pepe', I'm not sure why or how he got that from Cooper but we think he hears the "P" in Cooper, but anyway, that's his name.

Life wasn't stressful enough, so about 11 this morning after Jack was recouperating, I ended up in the ER myself. I had been complaining for a couple of days about pain in my low back radiating further down. I said the heck with it, I'm in a damn Hospital, let's get it checked out. Looks like nothing to worry about, a pinched nerve or something. Our friend adjusted me (she's a chiropractor) and it felt better. Also, they gave me some Vicodin for the pain...and I'm feeling pretty darn good right now.


TTFN

Wednesday, November 8, 2006 3:57 AM CST

Update - Part Two (Wednesday --9 p.m.)

Did we forget to mention that Jack's heart function is very, very good? His annual heart cath and biopsy showed very good results and zero rejection! His transplant cardiologist says she is "very happy." In the midst of the ginormous headache issues, the heart of the matter got lost!

We think we are going home tomorrow. Or at least Mama Bear said she's putting the cubby in the car with the IV pole hanging out the window if she has to, but it's time to go. I guess we all prefer to leave without the assitance of security. By the way, there were two security guards posted down the hall from us, so Mama Bear casually asked the kind nurse, "Is there something you want to tell me?" The kind nurse responded that it had nothing to do with Mama Bear this time...


Update

A day of ups and downs

Tuesday started out great...all tubes out of Jack, sleeping well, transferred to the floor and ... after a little skirmish, discharge papers were in sight.

Then, we started to fight about feeding Jack. He hasn't had food since last Wednesday. They want to dry him out to stop the chest leaks and the only food available is portagen, which is a no-no with Jack from past experience. So we were told we were stuck with TPN and 'pray' the time goes fast. This is also when we were told we were going to be here for two weeks with the PICC line.

They were prepared to discharge us after we got a class on how to operate the pump. We'll we seem to win that border war and were going to head home with the PICC line. So, we decided to also consult with a Dietician on other options for feeding Jack, besides Portagen. Turns out there are, and that sparked another session where MaMa Bear verbally mauled a few MD's. "I'm not going to not feed my Baby", could be heard in Rochester.

As this drama was unfolding Jack started to have uncontrollable fits of rage. This grew worse as time went along. Back arching, screaming at the top of his lungs, loose stools and just general misery. We consulted with Doc's ... must just be a pain issue ... Jack has an episode where we look into his eyes and notice he's not there. Then his eyes go cross and stay that way. They glass over as he arches his back, screams at the top of his lungs and grabs his hair and pulls out a fist full. Mama bear needed to be restrained after seeing her cubby have a glob of that golden hair in his hand. Jack's face is cut in many places, his ears have cuts and he almost pulled out his PICC line and G-tube during the next couple of hours. We finally convinced the doc's that this wasn't pain and we needed another Stat CT Scan.

His ventricals are enlarged again.

A quick shunt puncture in the room confirms that there is a malfunction. We're headed to the OR as soon as the neurosurgeon and the rest of the crew can be russeled from bed. An hour later we kiss Jack fair well for teh thrid time in six days as they cut into his skull again.

It turns out the tube that goes into the brain is working fine, however the old one left some blood behind that filtered into the shunt and plugged it up. They replaced that and as I write this, Jack is headed back upstairs to the PICU.

Hopefully without a headache.

Papa and Mama bear are eagerly awaiting to baby our baby...and then get some sleep.

Monday, November 6, 2006 9:31 PM CST

Hostage crisis situation...


Hey, I like this ammunition we're getting on going home with a PICC line. Battle plans are being drawn as I write...

Jack's PICC line/ heart cath/ biopsy went fine today. The pressures in his heart are 'the high end of normal', subsequent echo's and xray's showed no more effusion or fluid around the heart. There is no explanation as to why Jackers has this darn pleural effusion. The neuro folks re-read the emergency CT scan from last night and are very happy with the picture, his ventricals are receding back to normal. We just don't have results yet on the biopsy, but would be surprised is anything came back showing rejection.

Clinically Jack is doing fine, he has managed to detangle himself of the chest tube, the air canula, the foley, the IV and most of the tape on his body. He even got a bath. We just have the PICC line and those darn monitor leads attached to him now. Jack likes the freedom of sleeping on his tummy due to this. He is pretty irritated though. Some of the narcotics he's been given for pain, along with his stitches, are making him itch and umcomfortable. He's not a happy camper (see next paragraph), so he continues to get a little morphine from time to time to help him. Part of the battle plan for tomorrow is to start the process of weaning that down and bringing our old Jackers back.

What's the game plan? I don't know, we'll discuss things with the Cardiologist tomorrow and see where we go. Poor Jackers has not eaten for about 5 days now and he's nearly beside himself and so is his Mama. In any other situation, someone would be calling child protective services, but the hospital is allowed to starve kids--for the better good. It just seems plain cruel,doesn't it?

Our gam plan is to push to go home, even if that means coming in every day for an x-ray. Heck, we will all sleep better at home. The place where actual healing happens.

Tomorrow will bring an action plan . . . or the Mama Bear will just badger the hospital staff so much, they could potentially ask us to leave and then our hostage crisis will be over.


We have a string bean folks...
(One note, when Jack was still on the vent and strapped to the back board drugged out after the cath procedure, we actually got a chance to measure his length. He was still and fully stretched out. He is now 35" long, which is not much shorter than Cooper. Jack has made major strides in this department since this summer. He's a slanky lanky fellow, being almost 10 pounds lighter than Coops though.)


P.S. Prayer warriors needed
**Please keep our little neighbor, Logan, who is also a twin, and his family in your prayers. Logan needs to jump start his kidneys and get extabated. His parents are ready for him to be conscious too. It's been about 5 days since they've got any lovin' from Logan.

Monday, November 6, 2006 1:34 AM CST

Update...early Monday morning

Sunday was relatively quiet. Jack made a turn for the better late Saturday and by Sunday afternoon was not only off the CPAP, but almost off oxygen altogether, down to 1/8 litre on nasal canula. The chest tube drainage is way down and he seems to be doing good.

Then around midnight tonight he started to arch, grab his head and scream at the top of his lungs. Very similiar to the happenings of Wednesday night at midnight. We rushed him down to do an emergency CT scan to see if the shunt had failed again and Jack's king kong headache was back. As I'm writing this preliminary reports are the shunt is working! Thank you God! It's probably more a dig on Daddy because that means Jack is just in pain from drilling a hole in his head, and his chest, a foley, an IV and tape everywhere...and Dad was trying to keep the morphine away as much as possible (it was interfering with his ability to saturate his blood with oxygen).

We'll manage his pain a little different now.

So that's the story on his head...things are working, just some residual pain from the surgery. Here's the story on his cardio system. Tomorrow we go to get a heart cath/biopsy to check pressures and for rejection. Here are the options...(1) if rejection...treat with steroids and dial up his immunosuppressants at home and of course pray that's good enough, (2) if pressures, caused by a clot somewhere, either surgery (the last option due to his size) or treat with blood thinner to get to go away, (3) if neither, then just treat the effusion and go home.

The deal is though either option above involves treating the effusion...by 'drying' him out. That means no food for a couple of weeks (there was an option for Portagen formula instead, but as Mom has said, from earlier experience, that's like pouring bleach into his stomach). So, Jack will not get any food for a couple of weeks to completely dry out the effusion, let the lymph system heal itself and eliminate any more problems like this. Of course, you can't go a couple of weeks without providing some type of nourishment to a growing two year old...the solution?...TPN through a pic line. So tomorrow they'll put in the line, sew it to his arm and we'll start TPN. You can't go home with this type of line, so we're stuck here for a couple of weeks regardless.

Of course we're hoping it's not rejection or a clot, but option three doesn't seem like one we should be hoping for either. Kind of stuck on this one.

Is there an option 4? Who knows.

Little Jack has been through a lot in his 27 months. We just want him to get better and get back to the fiesty little boy we know and love more than life itself. Soon Jack...

Sunday, November 5, 2006 8:46 AM CST

Update

Jackers' Saturday started out a little rough with trouble keeping his blood sat's up and putting out a lot of fluid from the chest tube. At 10 AM Jack has a big bowel movement and things improved greatly, as they usually do, after that. He was placed on a CPAP to help his breathing and the oxygen levels were actually turned all the way up to 100% at times. By the time the night rolled around, he was down to 35% and resting smoothly. Also, he hasn't had a hit of morphine since yesterday morning. His head bandage was removed and he still has all that golden hair there!

Today were going to rest, hopefully get the CPAP machine off and go to a nasal canula, maybe (hopefull) get the chest tube out and hopefully...start to eat again. Jack's been getting IV fluids since going on the CPAP. I must tell you this is an area that really miff's me off. We were sold that this nissan surgery would prevent him from asperating...but now, since he's on the CPAP and has a closed system around his mouth, they don't want him to eat over fear of asperation. What the hell am I missing here? We've plead our case because (a) Jack likes to eat and (b) if this damn nissan wasn't necessary, it's plain cruel to do this to a kid. To watch him try to upchuck when he can't just rips you apart. Anyway, the excuse is the nissan isn't 100% proof and we can't take the chance. Yeah, yeah, yeah, I suppose they're right, but I still feel like I bought a bunch of swamp land. Enough of that rant for now.

Anyway, today is an R&R day in preparation for tomorrow's biopsy. Jack's BNP number is way down, so that and his clinical appearence suggests to us, the medically untrained parents, that there is no rejection at issue here to help explain his leaky chest. We need to do this though to see what the issues are. So until then, TTFN

Friday, November 3, 2006 4:42 PM CST

Update...

Jack's VP Shunt Revision went fine yesterday. The portion that goes into the brain was plugged and needed to be replaced. Much to our (Mommy was ecstatic) relief the surgeon is not of the opinion that Jack’s hair needed to be shaved off. Jack is currently wearing a bandage around his head so we can’t tell, but we’ve been told that his golden hair is still under there ready to wow the world again (Mommy said it looks like a shower cap). Subsequent x-rays have confirmed the shunt is working, so systems are all clear again. We’ve been told that these things plug up from time to time (anywhere from 1 hour to 50 years is the range we’ve been given…so that’s good planning material isn’t it…) Anyway, things on that side of the equation are good.

Jack’s pleural effusion is the same as a month ago. Same location, same material, just not as big since we caught it early. Still a big I dunno on the root cause though. There was a theory that it was caused by a partially blocked lymph drainage duct common in heart kids. An ultrasound proved that theory wrong though. The leading theory is strange pressures inside the heart that is causing a back up in blood, further backing up the draining of the lymph system which in turn leads to leaks in the lymphatic system. These pressures could be a symptom of rejection. So, in order to get info to prove or disprove this theory Monday morning we’ll be doing the biopsy and heart cath. An Echo showed no thickening of the heart muscle though and he isn’t showing any signs of a fever, so this isn’t a ‘typical’ case of rejection either … if this theory holds true. I guess though it is more than prudent to prove this theory right or wrong, so we’re going with the biopsy on Monday. Pray.

The other leading theory is that this is just a process of the viral infection that he has had for the past couple of weeks (come and go and come back again). Which in the end is basically a fancy, I dunno.

Jack in the meantime is busy being Jackers in recovery mode. He was having blood sat issues today because he doesn’t like breathing with a hose stuck between his ribs. These shallow breaths were not allowing enough oxygen getting into the blood, so after a couple of different tries, Jack is currently on a CPAP to provide the support his lungs need right now. I’m sure this will be temporary as he starts his standard recovery. He has started doing #1 and #2 though, meaning that system is coming back on line rather quickly.

Jack’s shunt malfunction had to leave the poor kid with a giant headache the past couple of days. That combined with a couple of pounds of fluids tied to his right lung were tough on the little guy…so he’s just plain tuckered out. So, he’s still in the ICU now and I wouldn’t be surprised if he’s there all weekend as we wait out the biopsy/ cath on Monday.

Cooper in the meantime is out of sorts as well. He was up until Mommy got home last night, close to 10 p.m. Coops was too tired to climb the stairs to get to his bed by that time. He got up from his lounger, while watching a Bear and the Big Blue House video, and smiled for Mommy and put his hands up wanting to be carried. Mommy said that is Coops was so tired that if she would have blown on him he would have fallen over then. She got him tucked in and he fell instantly asleep hardly moving the whole night.

I experienced a similar sleep, taking advantage of the I and C in ICU, I found an empty room and literally crashed. I woke up a couple of times from training (to start and stop Jack’s food pump) but after realizing Jack wasn’t there I went back to sleep and finally feel half human now.

Obviously this event is throwing our schedules into utter chaos, but Jack is more than worth it and that subject deserves about half of this sentence.

So for the next few days it’s recovery time…pee, poop, breathing…sleeping and resting for the whole family and pray that Monday’s tests are safe and negative.

Thursday, November 2, 2006 5:09 PM CST

Jack's back in the Hospital.

The past couple of days Jack has gotten steadily more irritated and grumpy. We went through the mental checklist of what could this be, because as you know Jack is a complicated little guy plus...well, he's a little guy who is growing which has it's own set of vairables. Anyway, last night Jack was definitely telling us that things were not as they should. Around midnight we decided that we can't take any more chances and I brought him into the ER to get things checked out.

You know the drill...triage, blood draw, IV start, xrays, CT scans, 8 people need to know his history and the current symptoms, 8 specialities are called in, etc... etc... Okay, there's a little bit of sarcasim mixed in here, because I haven't really slepted since Wednesday. Anyway, long and short, Jack's ventrical in his brain showed signs of widening compared to one done in May of this year...which means of course his VP shunt in his head is malfunctioning. Also, xray's showed his pleural infusion from a month ago is back and his BNP is back up. Great, many issues again.

After waiting until about 7 AM we were transferred to the floor to await a consult from neurosurgery about a shunt revision. The decision was made to do the revision this morning, as soon as possible (but not an emergency, because we were ahead of the game this time) around 9 AM. About 10 AM we were down in the surgical waiting area talking to anesthesia and about 11:00 they took Jack away to have his head reopened and his shunt fixed. Mommy and Cooper arrived at the Hospital around noon and we proceeded to fight with Cooper for the next 2 1/2 hours as he didn't want to sleep and we didn't want to leave with Jack still in surgery.

Around 2:30 the neurosurgeon came out and said the revision went fine. The piece of tube that goes down into the brain had been plugged and needed to be replaced...apparently brain matter had started to grow into the shunt, a common occurence, especially in small kids who are growing. Everything is working fine and Jack's King Kong Headache should be gone now. Poor kid, he really was in a lot of pain. In addition, a chest tube was placed to drain the pleral infusion and Jack's back in 5C now.

The name of the game is to clear the head problems first (a good axiom for life I guess) and then figure out what is going on with this leaky chest. There are a few theories out there, we'll see what tomorrow brings. Jack is recovery and doing fine. Coop and I made it home for a couple hours of sleep and then we'll be heading back for the big switcheroo soon, with Mommy coming home and Daddy doing night shift duty with Jackers.

Hope this is making sense, I'm just dogged tired right now. When I came home I fell into a black sleep for an hour. It felt good, but man, we are exhausted as Robin feels the same way.

I'll let you know more later.

Sunday, October 29, 2006 2:32 PM CDT

**New 2006 Halloween pictures posted!

"This Place Stinks"

Aaaaah, those words. Our darling Mini-Cooper added a new twist to this saying on Saturday. Mommy opened up the nursery door to get him out of bed only to find that he had already been quite the busy guy. This was the day that Cooper had decided to fill his diaper FULL of poop, rip it off, and fingerpaint all over his crib. Mommy screamed, Cooper smiled, and proudly raised his hands as if someone shouted, "Drop your weapon and put your hands in the air." Daddy came running and just about got knocked over from the stench. Mommy and Daddy somehow managed to get Cooper in the shower and hose him down, scrub him and douse him with apple cider vinegar for good measure--and all three of us were crying for different reasons! All of this was accomplished before 9 a.m. and one cup of coffee! Meanwhile, Jack was content to watch "Bear and the Big Blue House" and let Cooper have all the fun!

We have been struggling with Cooper taking his diapers off after he wakes up, so we have been using electrical tape around it to keep it on. Did I mention that the tape was still around Cooper's waist?? We have a new potty to begin training and we have been watching Elmo learn to use the potty, so we'll see...

After much needed naps (and A LOT of tape), both boys got dressed in their Halloween costumes to go to Gerten's pumpkin patch for pictures. Jack was thrilled to be wearing the same costume he had at Easter. It's very thick and he had his fill of it at Easter. I think the pictues tell it all.

Jack was scheduled for his annual clinic appointment and biopsy this past week, but we canceled it. He's still pretty tired from his recent hospitalization and cold, so we all (doctors included) decided there was no reason to push him. He'll be going in a few weeks before Thanksgiving (we thought the holiday timing was appropriate to get GOOD news!)

We took both boys to the eye doctor for a check-up. Jack got the all clear that he doesn't need any additional eye surgery and no glasses. The doctor was very happy with his progress. But, we found out Cooper needs glasses!! Apparently, he is far-sighted and will need them to correct it. The doctor said he thinks it will be a temporary measure to correct it and then he won't need them. This is apparently common with premature kids. We are quite surprised because Cooper shows no signs of any vision issues, but the doctor said it's not an issue of poor vision, but correcting something. We have to go back, so we have more questions now that we've had time to think about it. Just getting through the appointment was exhausting, as you can imagine, the boys were NOT cooperative in the least! We can't imagine Cooper wearing glasses. Do they make glasses strong enough to withstand a Mini-Cooper?

It's been busy around Corbo Central (AKA "Smelly Central"). We are preparing the boys to answer the door to all of the trick or treaters! That should be interesting! They love to answer the door.

Have a safe and Happy Halloween!

TTFN

P.S. There is a scheduled event Nov. 12 at the Mall of America sponsored by LifeSource to promote organ donation. They will be registering people as organ donors. This is a good time to remind everyone to think about leaving behind the Gift of Life. Please consider becoming an organ donor and tell your family your wishes to do so.

Wednesday, October 11, 2006 7:30 AM CDT

Everything is fine at the Corbo house.

Jack is back to himself from his 5 day Hospital stay. He's playing, sleeping, eating, playing, sleeping, pooping and being a two year old into everything. We continue to refine his diet and work on his physical development. It's time to start pushing him a little on this; at times he shows that he's on the cusp of a major breakthrough, then other times he seems to slip into a comfortable routine where he doesn't want to be challenged. Our gut says, push a little and he'll be mobile soon.

Coops is doing fine. He has his challenges too, but is working on them. A few months ago we were worried about his speaking ability and very limited vocabulary. Now we are busy trying to keep up with the many words that come out of his mouth every other moment. He's come a long way and is starting to string words together (e.g. yesterday he said "choo's choo's on the wa wa" for seeing a train cross a bridge over the Mississippi). So he's doing fine in that department. He needs to continue to develop an attention span, but it's so hard to judge this because, well, he is 2.

Cooper has developed an interesting little habit, after his diaper is very wet (e.g. in the morning) he likes to take his pants and diaper off and throw it on the floor. Then bounce up and down in his crib singing (he's pretty good at "my County tis of thee"). Unfortunately, he forgets there is no diaper to catch his pee, so it goes all over his crib or elsewhere??? We remedied this issue by duct taping his diaper for the night (I do work for the largest tape company in the world). This has worked wonders and saved a very, very messy situation from happing when Coops woke up one morning with not just pee in his diaper. We're thinking that Coops may be at the beginning stage of being ready to potty train...???

We don't even know what the world would be like if that were to happen. Maybe we could replace my truck with all the money we'd save on diapers???

That's about it for now, trying to stay sane and raise two two year olds...

p.s. Our little media star made another appearence this last weekend - Jack appeared in the Minnesota Vikings game program with a little story about him and promoting organ donation. Way to go Jackers!

p.s.s. Jack's friend Ellis has gone home! Way to go big guy and keep fighting!

Tuesday, October 3, 2006 7:38 PM CDT

Update #5

Intense conversations between Cardiologists and other specialists, Medtronic specialist rushed to the Hospital to read his pacer, reading reports and getting numerous blood tests, consultations with other specialties and deep research projects for residents...all in an attempt to find out why Jack had this "large" plural effusion (lots of fluid in the membrane around the lung). Theories running all over the place lead to recommendations ranging from split his chest open and fix that darn pacer wire to using more drugs to leaving him alone (Jack voted for this one). Finally today we got an answer...

A big

I dunno.

I guess we mark this one as one of those instances where the best minds in the business can't explain things and we leave well enough alone. Putting aside the sarcasm for a minute (hard for me to do), the doc's were great and the situation is very perplexing. No theory panned out, which in some ways is good and in others...well...sometimes ignorance is bliss.

We just don't know what caused all this fluid to pack itself in his chest cavity on the right side. I think the leading theory has the most merit, in that his body got overloaded with fluids, compounded by the fact that we stopped his diuretic, throw in a cold virus and a dozen teeth all cutting at once, and you have a soup of stuff going on inside a two year old's body. I think it was just too much for him to handle, his lymphatic system was backed up some and it started to leak and collect in the right side of his chest. That's the theory that makes the most sense. The fix is again anything from cracking the chest to fix the pacer wire (and give the heart a more synchronized and stronger push on all these fluids) to diuretics. The fact that Jack's echo and blood showed no signs of rejection or heart failure seems to suggest that we have achieved harmony again.

So, we're back home on the same drug and food regime as when we started. A little wiser and watching things closely. We did decide to d/c the additive in his food we started a few weeks ago. We just don't want to add another factor into this equation.

A couple of fun tidbits...

1 - Jack's BNP, a protein that measures how function and indicates heart failure, is the lowest it has been since the transplant. At Easter time, before the pace maker, it had shot up to over 1400 and things were not looking good. Saturday's level was in the 400's, still high for 'normal' kids, but not unusual for a transplanted patient and the lowest Jack has ever had.

2 - Jack's renal function seems to have found the chi it's been searching for also!

3 - All of Jack's blood gases and other blood indicators are back in the 'normal' range.

4 - Jack actually smiled and carried on a conversation with the Cardiologist today. The first time he's done that. Usually by the time she sees Jack, he's mad and tired and all she witnesses is the inside of his mouth as he's crying.

5 - Cooper was mad, mad, mad at his parents. He gave Mommy the cold shoulder for a while yesterday and I got it tonight when we got home.

6 - Cooper has learned the name of his nanny, unfortunately he's one behind, he calls his new nanny 'Sarah', which was the one he had this summer.

7 - The transplant team has made notes in their charts to "listen to Jack's Mother!" When she says she wants Jack to come in, he come's in.

8 - Mommy, Daddy, Corbo Boy #1 and Corbo Boy #2 (their names when they were first born at Children's Hospital) are all home and sleeping in their own beds tonight!

So, we are home and starting over again. Jack goes in Monday for an x-ray and blood work to check things out. Hope it's fine.

One final word, we learned that two of our favorite PICU doc's are leaving soon. Rich and Kelly, we'll miss you guys! Thanks for everything, please come back if the opportunity ever presents itself, through your efforts over seven months, in particular one night, our son is here. For that we are forever thankful!

TTFN

Monday, October 2, 2006 6:39 PM CDT

Update #4

It took us to about 4:30 today to actually talk to a Doc on Jack's case. So, there was a lot of pacing going on in the room and hand ringing. Theories were running rampant from people we talked to, mostly the Resident's, from this could be a form of rejection to a lympthatic back up which would require surgery to this is unexplainable and we have to run some more test, to include the heart cath/ biopsy to check on internal heart pressures.

The surgery part is what scared us the most, basically the idea was that his right atrium was out of sync with the rest of his heart, it was pushing when the flap was closed, causing big pressures in the chamber and backing fluid up back stream. This would back the drainage of the lymphatic system into the heart veins and thus cause lymph juice to leak and accumulate into the chest cavity. The remedy? - go and fix that nasty loose wire on the pacer. This wire has never adhered properly to Jack's right atrium and if it did, we'll we could synch the heart more properly and this problem would disappear. Great -- not so fast -- that means cracking the chest again and fishing around down there to get the wire to stick. Lovely.

So, after thinking about that all last night and until 4:30 this afternoon, we were ready to explode. Also, Jack's chest tube has stopped leaking fluid since midnight last night...so pull the damn thing. Of course, no one would do that without a Doc saying okay. About 4:25 Robin had enough and we started to rummage through the supply cart looking for the items needed to pull the tube ourselves. We have seen the procedure done a few times and feel we could do it. At 4:30, a doc came into the room and unbeknowest to him, he prevented the unauthorized practice of medicine.

Basically, all the theories don't stack up. It could be the back-up plumbing issue and wacky heart pressure issues from above, but echo's and behavior don't confirm that. So, the idea is to wait another night to make sure no more drainage from the tube, take an X-ray, and if everything is okay, then get out of town and go home tomorrow evening (or sooner, but I'll temper my expectations for now, since I'm a veteran of Hospital discharges now). We'll follow up through clinics and at already scheduled heart cath for his two year anniversary in a few weeks.

How's Jack? -- peachy keen and back to his old self. He and I wrestled last night in his big boy bed. He won, but he cheated by sticking his fingers in my eye, pulling the corner of my mouth and biting. They'll be another rematch when we get home, it'll probably be a tag team effort with Coops, so I'm resting up for the time being. Jack is in great spirits, playing with his toys and being a two year old full of mischief. He feels so much better now having all that gunk out of his chest cavity.

I didn't get a chance to see Coops today, but from the sounds of it he's doing great. He went shopping with Mommy yesterday after the Hospital visit and had a great time. Mommy said that you have to walk down the middle of the grocery store isles, otherwise everything is grabbed or pushed over on the shelves. Coops did get a hold of the banana pile, which caused Robin to spend some time picking that up. But he did good and definitely would enjoy another try at it.

So, maybe we'll be HOME tomorrow with two boys?!

TTFN

Sunday, October 1, 2006 6:13 PM CDT

Update #3

Results of the fluid test show that it is probably not related to an infection or a back up from his VP shunt, and there were traces of lymph matter in the fluid. This suggests that there may have been a lymph malfunction and possibly related to heart malfunction, namely the right atrium. This is the chamber that we have had trouble with for a while now...where the pacer wire has not adhered to well enough to make a connection. Consequently, that chamber isn't being paced and this may have been a result...when taking into consideration the fact that we've made substantial changes to his diet, fluid intake and tried to d/c his diuretics since the clinic visit in August.

At least the the operating theory for the time being.

We'll know more tomorrow after a meeting of the minds. They will probably want to do a heart cath to check chamber pressures, rejection amongst other things.

Jack is a little mellow today. His breathing is better (the x-ray is much better), but I think the trauma of the past week and pushing around all that fluid has taken it out of him. He also knows where he is and will scream whenever someone in a white overcoat walks in. It's sad, being two and scared already.

We're still confused to be anything but worried for Jack right now.

Coops is doing fine, being that little fireplug he always is. I took him to work for a couple hours this afternoon to try to make arrangements for me to be gone Monday and Tuesday. I got that accomplished and Cooper succeeded in destroying my office. I just left it, as I was in a hurry to get back and be with Jackers.

Holding steady on the Floor, I'm sure tomorrow will bring more answers and questions.

TTFN

Saturday, September 30, 2006 9:41 PM CDT

Update #2

The diuretics didn't do the job, as was pretty evident early this morning with normal sized diaper output and increased labor breathing. It took until about 3 p.m. to do something about it though, as to schedule the blood draws, ultrasounds, IV's, etc... in similiar to organizing a cat convention. But, at about 3ish, Jack was wheeled over to his old stompin grounds on 5C and some lung specicialist inserted a drainage tube into his chest cavity.

It turns out I was mistaken yesterday, the fluid was not in the lungs, but in the chest cavity by the lungs, pushing up on the lungs and causing him to have some pulmonary distress. His sats were in the mid 80's prior to putting him on 5 litres of O2 last night. By the time the sun rose, we had gotten him down to 2.5 litres and sat'ing around 95. So he needed some help. Anyway, the drainage tube had immediate effects, draining off close to A KILO of fluid from the cavity (that's over two pounds to us using the English system). Poor kid.

We felt terrible knowing what he was going through trying to breath with that big rock stuck to his lungs. But you know our Jackers, he may complain a little but he keeps on truckin.

Anyway, the tube is still in and some fluid continues to flow out. His breathing is less labored, but his lungs are going to need some help re-inflating and getting back to normal. Cultures are being run on the fluid to help determine the cause...possibilities include heart failure to pnemonia and everything in between.

Jack feels better now, and really was a trooper through the whole thing. After the drainage we got him a "big boy" bed for the rest of his stay in the Hospital. He likes it because it sits up for him and he can watch his Elmo video's a little easier. He's pretty content right now, and not a lot of pain killers (Tylenol only), so you know this kid must have a high tolerance for pain when he has a tube sticking through his rib cage and doesn't complain.

We're going to be here a while as we have to figure out what caused this and how to treat it. No one wants to guess, it could just be a day or two, or, I suppose, a week or so. Hard to tell right now.

Coops of course is out of sorts, with his parents running around town and dragging him with. He wakes up and his routine is out of whack, because Jackers isn't there. He keeps asking "where's Jack?". Coops came to the Hospital today and tore the place apart, but at least he got to see Jack. Hopefully we'll be able to put things back together for both boys soon. They both thrive when they're on their regular schedule and know what to expect in the day.

So, it's back to Jack's room to spend the night. One nice thing about Jack's big boy bed is that this big boy fits in it with Jack!

TTFN

Saturday, September 30, 2006 4:53 AM CDT

Update...

Jack woke up early Friday and had a puffy face, so much that his left eye could hardly open. We brought him into the Hospital to get an xray and blood draw to check things out. We were sent home, but had to turn around when the xray was read and there showed signs of significant fluid build up in his right lung. Upon returning to the ER and a full CT of his lungs, it shows his right lung is almost full with fluids. We are now back in the Floor, seeing if diretics can do the trick. If not, today (Saturday) we'll probably have to put in a drainage line and help his lungs out. His sats were in the mid 80's when we got to the ER, and with a little blow by it goes up into the low to mid 90's, so the kid does need some help. Not sure what it causing it...so, we're holding steady for now.

TTFN

Thursday, September 28, 2006 7:27 AM CDT

Jack blood draw last Friday yielded "normal" and if pushed, a weak, but don't quote me "great" results. The new regime of vitamins and medicine has helped push his kidney function in the right direction. Yeah!!!

But (had to have that)

The past week has been miserable for the entire clan. Thanks to Jack's new dietary plan and increase in free fluids, his body has been kicked into major construction mode (known as Road Construction Season here in Minnesota). He has gained close to three pounds since mid August and grown an inch plus PLUS his mouth has decided to start growing toofs again. Okay, I know this isn't going to sound honest, and my dentist didn't believe me when I said it (but I had the guts to say it when he had a sharp instrument in my mouth, so you know I'm committed), Jack has sprouted a dozen new teeth! 12! That number is probably higher, but we don't get hazard pay to count and we like our fingers. Okay, that's great right? Yeah, but, the poor kid's gums and jaw are hurting him so bad that he has been miserable. He lays around most of the day (and all of the night!) moaning, groaning, drooling, crying and signing for more oraljel, tylenol and the rhytmic pats on his butt. He has that roiled brow that suggests a dull pain and you look at him and feel the pain in his jaws. And then, he'll look at you and smile and say "Elmo" or "Bubbles" or "MaMa" or something else cute. Then two seconds later back to the moaning, groaning, drooling and crying.

For a week now, all day and all night.

This also effects his bodily functions, which has caused us to take him to the Pediatrician once, apply for a home equity loan for diapers, and of course bath him in oraljel. We walk around with bags under eyes that make grocers jealous.

It's worth it, I know. See Jack close the weight, height, teeth and development gap with his peers and his brother are what we've been waiting for for a long time. So, we'll moan and groan for a little while, but our own souls are mending with this also.

And of course Cooper...the kid is the light of sunshine in our days. Thank you God, I don't know what we would be like without this little red head in our lives. (I'll tell stories, but not now.)

TTFN

Thursday, September 21, 2006 7:22 AM CDT

*******NEW PICTURES ADDED 9-18*******

Test Results are in...okay, just preliminary...5 days...close to 5 hours...right??? enough! ... the GFR study showed Jack's kidney function was slightly below normal, but higher than our Cardiologist thought it would. There are many possible explanations as to the "slightly below normal" finding, we'll let the experts debate that for now. The treatment for this? -- watch, keep an eye on it, don't concern yourself with it, nothing new in his daily routine for now. Great! (with the oh so little exception that Jack has to go back in on Friday for another blood draw...he's doesn't know this yet though...what a way to start the weekend :(

So, that's good news as far as we're concerned. Jack and Coop have both caught a little sniffle the past few days, but besides that are doing great. Jack's weight gain has stabilized and he's doing great. He even "crawled" forward a couple of inches the other day...commando style. We're getting there... Jack's toofs continue to be his nemisis, as he goes from a fun loving, playing little boy to hell on carpet as the pain starts. Taking baths in Oraljel help, but it wears off after a while.

Coops, our one time gentle giant, has become a slanky lanky. A combination of a decreased appetite and a sudden growth spurt have made him long and skinny. The one time pudgy buddy is long and slender now. He's a typical two year old, loves to explore and get into trouble. He's the only two year old I've ever seen who takes athletic strides when he runs. I use to be able to "walk fast" to catch him when he was running (usually towards the street) but now I have to break into a trot...and I'm three feet taller than him! Unfortunately, Cooper has his father's grace and does tend to have items fall in his way more often than naught.

That's about it for now.

TTFN

Sunday, September 17, 2006 4:25 PM CDT

****NEW PICTURES****

Just a quick update, the slow moving drama on Jack's kidney function continues to grind along. Friday we woke Jack up very early and got him ready to go the U for a GFR test on his kidney function. Okay, by the time we got him in the van he was all smiles and laughs, even though his sleepy time is sacred. This brief period of forgiveness was soon over however, as he saw the parking garage for the U Hospital loom in the distance. Bad move Mom and Dad!

We'll, we got him down to the patient room to start an IV. The first stick was a diaster, with Jack turning shades of red I did not know existed. He was mad...first my sleep, now you're poking me as he looked into my eyes with these huge tears streaming down. I could almost hear him say...but Dad,you said this wouldn't hurt...why????

They went and got the ultrasound machine to help with the IV stick. That worked like a charm and within minutes we had a great IV. They stuck in the dye and said, be back in an hour for the first blood draw, then three more after that for a total of four blood draws. The plan was, if the IV was good, we could get the blood that way...otherwise...more poke's.

Praise the Lord, this time it worked! The IV held throughout the day and the four blood draws went fine...End of story, right? No, after the last blood draw, Mommy was holding Jack and they were going to take the IV out to send Jackers home. The Tagaderm (plastic covering) holding the IV in place was a bit sticky and pulled on Jacker's hair and skin a little too much. He screamed and popped his IV out. Blood shooting everywhere. Which made Jack scream more. The iron willed Mommy though held her little boy tight and got him through it, with just a little blood on her pants. They packed up and came home, with the promise of news on the test by 5 p.m. Friday night.

That was almost 48 hours ago, we're still waiting.

Hopefully things are working good and no news is good news. We'll find out Monday (We hope).

We have determined that Jack has really benefited from our visit with the nutritionist at the last clinic visit. His new diet has caused him to grow almost and inch in a month and put on 2 full pounds and so much hair he looks like a muffin head when he wakes up (time for a hair cut again). The only bad part of this is that it has kicked-started his toofs growing again. He has, no kidding, a dozen or so ivory points poking through the bottom gums. We can't tell how many on top without losing a finger. He's a little miserable because of that...so we're buying stock in Oral-Jel as this seems to temporarily relieve the pain.

That's about it for now.

Thursday, September 7, 2006 7:35 AM CDT

Jack went into the clinic on Tuesday to get his renal function checked out. The doc checked him out and read through the files (I can't imagine how, since his files are literally taller than I am when stacked together). She asked us a few questions and we got the impression that she was wondering why we were there. That's a great impression to have. However, reality bites back sometimes and we had to explain that our Cardiologist was being extra careful and we wanted to be proactive, so we want to make sure his kidney's are doing what they ought to and if there is a problem, let's attack it now before we have bigger issues to deal with. So, they took some blood and urine and ran some tests. Again, it most of the values show signs of returning to normal, but one that was normal last time, is no longer normal now but on the borderline (I can't remember which one). So, the kidney doc wanted us to go up on one med and then bring Jack in to do a dye ultrasound on the kidney's to get a better look at things...maybe tomorrow.

We still have the impression that this is not something urgent, but something we need to be on top of and are being overly cautious. As the doc's have stated before, we all have a lot invested in Jack, let's protect this investment. I guess that's the right approach.

So, this mini-drama will play out for a little while longer. We're hoping it just peters out and becomes part fo the background noise in Jack's life.

Onto other fun things, Jack literally inches closer every day to the major milestone of mobility. Yesterday, Jack's OT showed up and as soon as she stepped into the house Jack had a fit. Crying, arching his back...he just didn't want to work out. Finally Mommy got him settled down, but by that time the OT had just a few minutes left to work with him. As soon as Jack heard the OT closing the door to leave, he was all smiles, laughter and full of mischief. He rolled around on the floor AND got up on fully extended arms, raised his butt into the air and moved backwards. I came home a few mintues later and he did it again, this time forwards. He then fell back down and rolled over to where he wanted to go, but he now knows he can do it. True crawling and mobility can't be too far away.

We know he had the strength to do it. It's really a matter of will power. I'll lay with him stomach to stomach (he's on top of course) and start tickling. He'll eventually get mad and straighten his legs. While he's having his fit, I'll start laughing because he'll actually be standing, supporting his entire body and weight on his little legs. He can do it. We're still optimistic of walking by Christmas.

TTFN

Sunday, September 3, 2006 9:18 AM CDT

**New photos**


Jack had another blood draw last Thursday and while his BUN approved into the normal range, other Kidney function indicators remain on the border line. The solution? Draw more blood! Well, actually we'll go in on Tuesday to see the kidney specialist to get things checked out. We'll do another blood draw of course, but want to get ahead of any abnormalities here and address then up front. His K was a little too high, which we have added a medicine to correct also.

So, Tuesday we go in to check this out.

Wednesday, August 30, 2006 2:01 PM CDT

Jack's clinic visit went very well. His heart function has vastly improved, while not perfect. His Injection Fraction was a 72, which is well above a normal of in the 50-60's, much above the 9 with the old heart and in the 40's immmediately after the transplant. The pacemaker was the right thing to do. His heart is functioning much better and has actually shrunk a little from what we were told. Meaning, it's closer to the size it should. He is using his pacemaker a little more than we'd thought he would at first, but that's okay. The only issue with the pacer now is one of the leads doesn't have the best connection to the atrium, therefore they can't get the best readings from the pacer. However, the improved function suggests that things are working fine. We may have to re-visit the lead connection at a future time, probably the same time we need to replace the pacer due to Jack's growth or the battery life.

Jack's blood work looked fine, except for some slighly irregular readings concerning the kidney function. Consequently we'll start seeing a kidney specialist to be proactive and make sure that we are ahead of the game there. The drugs Jack is on are hard on the kidney's, so that's something we have to be vigilant for. On the other hand...all of these abnormal readings (actually they were at the high end of normal) could be from the "hard" blood draw (three sticks and a lot of crying) or the fact that Jack was slightly dehydrated when we went in there. So...in a couple of hours I'm bring Jack back into the Clinic to get another blood draw (I haven't told him yet though). Hopefully the values will be more in the normal range.

Jack's weight and growth caused a consultation with the nutritionist. We have a slightly modified feeding regime to follow now, however again he is just on the low side of normal here, so it's probably more of an issue of just more food and water and he'll be catching up with Coops real soon.

All and all a good, almost great, Clinic visit.

Stopped by the PICU and said hello to friends (both ours and Jacks!). It was good to see them and even better to know that we were leaving with Jack to go home. Last time we were there for a clinic visit, Jack ended up staying for 10 days and getting a pacemaker. Oh what fun that experience was for everyone.

Coops stayed home with Grandma and enjoyed his time. He continues to grow and explore. He has recently learned how to climb up on chairs and then countertops. Also, he is starting to think that highchairs are for little boys, as he wants to sit at the table at dinner time now. We're all learning and growing around here!

Anyway, good news, hopefully we'll turn that into great news after today's blood draw.
TTFN

p.s. We'll try to get some updated photo's on soon. You'll have to tell us if you think they've grown since their birthday.

p.s.s. 48 days until the 2nd anniversary of the transplant. On that day our letter to this amazing family will be delivered.

Saturday, August 26, 2006 8:11 PM CDT

All's quiet on the Corbo front.

Monday is a big day, as Jack goes to the Clinic. This will be the first visit there since his pacemaker event back during Easter time. He's has grown sooooo much since then, I don't know if the doc's will recognize him. Not so much in dimensions or weight, but in strength and development. Jack is a strong kid, and if you want my personal opinion, he has the strength to crawl, stand on his own and maybe even walk, if he wanted to. And that is where the issue is, Jack's motivation to get up and get out. We push, but only so much, as with everything in the past 26 months plus 31 weeks, Jack does things his way and in his time. So, we wait, encourage and celebrate every little milestone along the way.

We hope that the clinic visit keeps our spirits high. Besides the biggy prayers (e.g. no rejection, kidney and liver looking good, lungs clear and pacemaker working fine) we have couple of not-quite-biggy prayers we'd like to ask for. First, we'd like to see Jack go off 2-4 of the meds that he's on now. We don't think he needs them and we'd like to spare any of the side effects. Second, we'd like to get a plan together to work on him using his mouth for things besides biting our fingers, like eating! and thus gaining weight! Finally, we'd like continue our prayers and ask everyone else to pray for his friend Ellis who is still recovering from his operation (okay, that probably qualifies for the biggy side of things).

So, Monday will be an interesting day.

Cooper is doing great. He has made a few friends in the neighborhood, mostly older women and he seems to prefer blonds. Everytime I bring him to the neighborhood 'tot-lot' he goes off running to the nearest woman and starts talking to her. Who knows what he's saying??? Today he spent the whole time in the tot-lot playing with a neighbor and her little girl and boy. Who cares where daddy is!

Cooper and I had a great day besides the park. We played with some new toys we got yesterday. We played with Jack...without fighting!!! He helped me in the garage and doing some chores around the house. I made a little sandbox and Coop's played in there. We went to the park again and played. We played Soccer and ran around the yard and into the street. Cooper got yelled at then, but didn't seem to care, as his behavior never changed. Finally, Coop and Jack played again with their new toys. Tonight, after bath time, Cooper said "Up" and starting to walk up the stairs. Okay, I said, that means it's night-night time. He kept going. I followed him into the bedroom. He closed the doors, locked the door, turned on the CD player, walked over to his crib, put both arms into the air and said "UP". I put him into the crib, put the blankey over him and kissed him good night after we said our prayers. I never thought putting a two year to bed could be so easy. Of course, I'm so damn tired trying to tire him out that I can barely type this. Anyway, I thought that was cute.

Thanks and TTFN

Tuesday, August 15, 2006 2:34 PM CDT

A few days ago Jack reached a major milestone...we've been working for months to help him learn to crawl, walk, use his mouth to eat and talk ... finally a major breakthrough...Jack didn't reach any of these items, we continue to work on them...but Jack has graduated into his own "BIG BOY BED"!!

Yes, after months of half-sleep over fear of hitting our little boy, Robin and I can now sleep in our bed ourselves! Jack enjoys his own space in our bedroom, it's just in his own bed. It was tough negotiating, he finally relented when we promised 400 thread count sheets. He stated that he has gotten so use to the finer things in his sleep life that anything less would be an insult, and probably result in a rash on his skin. We felt this was a minor concession considering the freedom of our bed back.

So things are getting better in the Corbo household. Our sleep life can only get better!

(Jack looks so cute in this little bed. He loves it to because in the morning the wall, in which part of the bed rests against, makes a wonderful drum for his feet. He just kicks, kicks, kicks making sure everyone is awake.)

Cooper is doing fine in his crib still. He prefers it and especially likes his soft blanket. Coops explains, "why would I want to change? I love it in there."

The boys are doing fine and having a good summer. Every night, after they go to bed, Rob and I get the shovel out and did through the toys and other assorted items in the front room. Preparing the battlefield for the next day's toddler assault.

I made it back from Germany without mishap, although I had to get ride of all my liquids in my suitcase, et. al. before flying.

TTFN

Monday, August 7, 2006 2:45 AM CDT

Things with the boys are progressing nice and smooth. Jack so wants to crawl and is getting closer every day. Cooper is into EVERYTHING and likes going to his "school". I've been in the military for the past week in Germany, scheduled to come back soon. I miss them so much.

Jack's friend Ellis is having some issues recovering, he's hit a few of those proverbial "bumps in the road". These are always scary and since he's a little complicated (like our Jackers) things can get rather frustrating as the scientist doctors work to find solutions. When we were in this situation, we were exhausted, having virtually lived at the Hospital. You're whole life stops and your whole life is wrapped up in this little boy laying there so helpless with so much equipment hooked up to him. Ellis can communicate somewhat, while Jack was too young for this with us, but what Ellis has stated is what we suspected Jack would have said, "all done, I want to go home". It breaks your heart, no pun intended, to hear and think this.

Ellis needs the Army of prayer to again shout, asking Him to help him.

Thursday, July 27, 2006 1:30 PM CDT

Well Ellis is starting to heal and get stronger. What a trooper! Yeah!!! Next February watch out...Jack, Ellis & Coops will be running around the Mall of America at the Heart Walk and they'll have four adults chasing them ... the way things should be.

Praise the Lord!

Now for a little update on the boys...

First, Jack is sooooo close to crawling. He wants to so bad. He has developed a pivot and roll technique that allows him to get all over the floor. However, sometimes he gets stuck under the furniture and gets mad...he's perfected the methods of letting us know he needs help! He has also developed a lot of strength in those little skinny legs of his and I think (hope, pray) we're still on schedule to make our goal of Jack walking by Christmas. He's on the skinny side, so he needs to gain some weight, but according to the Pediatrician all his body parts and measurements are proportional and he is growing, so it's a waiting game. The Pediatrician also said Jack hasn't hit him "baby growth spurt" yet, so watch out.

Second, Coops is a great two year old. He has started school, taking a night course with the local school district called "Time for Two's". We bring him there and spend a half hour playing, then the parents leave the room so the kids and the teachers can play by themselves. Last night when I drove into the parking lot, Coop opened the door while we were still driving (I learned a lesson there) luckily the straps were too tight for him to move much more than his arms. He was so exicited that he dragged me towards the door. I finally let him go ahead of me and he opened the big glass and steel door by himself (have I mentioned this is a little Superman?) and ran into the classroom to start playing. Playdoe, play phones, sand boxes, other kids, you name it...it was fun. When it was time for me to leave with the other parents, he didn't even notice. Oh well, at least he was having fun. It's helped a lot as his social skills have started to awaken.

Third, both boys are starting to talk more and more. At least in English. Coopish seems to be going out of style, as well as Jackian. To illustrate the point, the other night while giving Coops a bath he started to say UP, UP, UP. I looked at him and he smiled and made bubbels in the bathtub. Cute ... I turned back towards the TV as the Minnesota Twins were in the process of scoring 8 runs in one inning. A few seconds later I hear "Oh Oh". I won't go into details, but Coops had relieved himself in the bathtub (#2) leaving a messy job for Daddy. Daddy has since learned to listen to his boys, even if the Twins are winning.

Both boys have personalities that are fun. Cooper went to the zoo a few weeks ago and wanted to pet a Giraffe. They had giraffes close enough (next to a park ranger) that you could pet. So, I purchased the special giraffe cracker and carried Coops over to pet the giant beast. Coops saw the cracker and bent over and took a bite (yuke, it was blue and made out of who knows what). However, Coops apparently liked it because I then gave it to the Giraffe to eat and Coops was so mad at this animal for eating his food that he slapped it on the nose. Here I am, in between this 12 foot 1 ton animal and this 3 foot 35 pound mad little boy. The giraffe didn't seem to mind though, as he just kept munching away.

Hope all is well out there, keep praying for Ellis, he is such a special little boy. I'm looking at the picture of Jack touching him in the Pioneer Press at the Heartwalk and boy, both are just so damn good looking.

TTFN

Tuesday, July 25, 2006 7:43 AM CDT

Last night Jack's friend, Ellis, received his new heart! Ellis and Jack were the friends featured in the St. Paul Pioneer Press back during the Heart Walk in February. Ellis has had a long road to walk in his short life, but has shown amazing strength throughout. This strength is only matched by the grace of his parents.

The last update was Ellis had received the new heart and was having a little difficulty coming off the bypass machine.

We watch the website constantly for updates...praying, hoping and ready to celebrate the Gift of Life.

We can't help but feel the swell of tears in our own eyes as we were this family a few months ago. That night...getting the phone call...holding Jack before he went in...wondering when we'd get to hold him again...fearing that Cooper might not get to see his brother again...questions we couldn't even form in our minds because of the swirl of emotions...the enormity of the event was too great for any one day to comprehend.
Honestly, I still don't quite understand it all.

The doc's would come and explain things, order new drugs and d/c old ones. It all passed in a blur. All we could see that first night and day was our flesh and blood, the most precious thing in the universe to us, laying there on the table with tubes, monitors, wires and this big gash down his chest. We were thankful, fearful, hopeful and in many respects temporarily incoherent. I don't know how we did it...I don't remember much of that first day...I think we've blocked it from our mind.

Slowly God worked his miracles and we began to understand and come to grip with realities. It's a long, tedious journey filled with traps, pitfalls and wrong turns all compounded on the fact that this is your children you're talking about. However, as Jack started to come around again so did we. It was probably Thanksgiving, so about a month after the surgery, that we felt assured enough to leave Jack's bedside and attend a normal event - a gathering of friends and family. It was here at this event, while looking into Coop's eyes, that hope and thoughts of the future again took control of our lives. I've said it before, and I'll say it again, God gave us Cooper so we could survive Jack's ordeal. The two are a package deal and it's amazing what a little, little boy named after the old English name for "keg maker" can do to one's soul.

We've had moments of pessimism, but generally from that day forward optimism has come back into our lives as the driving force. Jack has had bumps and still has challenges in front of him, but he has a long life ahead of him to figure it all out.

Today will be hard on Ellis' parents. Pray for them, pray for Ellis and do it often. I believe that God heard the Army of people praying for Jack and it worked! Jack's friend needs it now.

Saturday, July 15, 2006, 10:22 p.m.

*New Photos posted*

Well, we have two exhausted parents in our household who are up to their eyeballs in dealing with jealously in twin territory. Cooper and Jack each get jealous of the other if Mom and Dad are doing something with the other. If they're not doing that, they are fighting over a toy or yelling louder than the other, you get the picture. The greatest thing about it? IT'S NORMAL!! These two are really cute together. Every morning they greet each other with a hug, and then of course, the fighting starts. But at least everyday is started and ended with a hug. Always a truce before bedtime. You can't beat that!

Coops started his very first early education class this past week. He did very well. He's certainly one strong kid and really enjoyed being out on the playground with his peers. Unfortunately, he took a dive and has a nice big scab all over his face. He's a little trooper though. He's also become a master of puzzles. He can put together a puzzle so fast, that he's usually waiting impatiently for another one to be handed to him.

Jack continues to thrive. He's quite the 'Chatty Cathy.' He's actually helping tutor Coops in the art of talking, as Cooper seems to not want to talk all that much, EXCEPT if Jack is hogging the airwaves, then he will start jabbering. We wish Jack would use his mouth for more eating. He still struggles to each solid foods by mouth. He was doing really well until his pacemaker hospitalization and spent some time on the ventilator. Between that experience and cutting 8 teeth, he hasn't wanted much near his mouth. He's getting a little better. The guy really needs to gain weight. Don't let the pictures fool you. The kid is pretty thin (most of his weight is in his cheeks) and according to his Pediatrician, has a fast metabolism to boot! Great.

The boys LOVE being outdoors, probably from all of those months of hibernation. They finally know what freedom feels like. They both adore their swimming lessons. They are pretty good swimmers. Coops can almost swim entirely on his own. What are we going to do in the winter??

The boys also enjoy their individual nights out with one parent for some one-on-one attention. Dad takes the swimming lessons and Mom takes each one for some field trip on swimming lesson night. Jack loves to go for a ride in Mom's car and see all the sites. Cooper generally loves something to do with going down a slide.

We're happy to report the Corbo household is on high alert for the terrible two's, but we wouldn't have it any other way.

We are fortunate that the boys are both home and thriving. We can't say the same for some of our little buddies. We pray that Jack's former room mate in the PICU, Ben, gets to go home with his family very soon after a surprisingly long stay and a pacemaker. He's an amazing four-year-old who has overcome major obstacles. We also pray for our little friend, Ellis, that he may get his angel heart soon. He and his parents are trying to live life as normally as they can while in the hospital waiting for Ellis's second chance at life. We certainly know what that feels like. This is a perfect opening to remind you to have a discussion with your family about organ donation. It's the gift that keeps on giving.

Please keep Jack and Cooper and all the precious ones we've met along this journey in your thoughts and prayers. They certainly have taught us so much about perserverance and hope.

TTFN

Monday, June 26, 2006 7:22 AM CDT

**New birthday pictures**


HAPPY HAPPY BIRTHDAY!

COOPER AND JACK ARE TWO!!!

Cooper started today out by waking up at 3 a.m. and wanted to play. After yelling and screaming for 15 minutes I went into his room to quiet him down...yeah right. We ended up downstairs with a little milk and both of us fell asleep on the couch until 6 ish. Cooper then got up and found his freedom and has been a holy terror since. Jack on the other hand continues to enjoy "his" bed upstairs (our King size bed) and just sleeps away.

A lot to celebrate today, I'll post some more later on when I have time. We have a "two" year old on the verge of a meltdown so have to run.

Thursday, June 15, 2006 8:50 PM CDT

**NEW PHOTOS*

We're 11 days away from Birthday #2. It the moments before we slip off to sleep we'll often reflect on this long, strange, beautiful journey. It's hard to believe that two years ago tonight, we were sitting in our living room, in a different house, wondering what our children would look like. Our biggest worries were getting the nursery done on time, making an appointment to tour the delivery wing of the Hospital and trying to stay cool (it was very hot around now). Robin was uncomfortable, as you can imagine with two babies inside. She had measured 40 weeks in early April, so by now her every move was labored.

You know our story from there. Unbridled joy followed by the depths of despair, to hope, relief, frustration, happiness, fatigue and every shade of emotion in between. Here we are now. Both boys are growing, interacting with each other and entering toddlerhood. We have issues to overcome yet, but progress is a certainity and I'm sure you'll be able to find two Corbo boys in Kindegarden in a few years.

To say thank you to the many people involved in this journey is not enough. The medical teams, the friends, the neighbors and relatives have all been too much. I at times have been cynical in my life, I hope and feel this experience has taught me the joy of optimism.

When we look into our sons' eyes, four blue ones staring back at you, you see God and his Glory. It's all worth it and we'd walk this path a 1000 times again if that's what it took (not that we're volunteering though).

My friend Rob's son is being born today. This little guy has a heart condition of his own. Rob, our family's thoughts and prayers are with you as you start this journey. Just know you have a network to fall back on if you need it and that God is with you and yours.

Wednesday, May 31, 2006 6:46 AM CDT

Okay, I'm sorry, I had to duck shrapnel on my way into the office today…

I’ll be more diligent on updating the site…

Jack is doing just fine. The pacemaker episode is like a bad 70’s sitcom now…forgettable and forgotten…well... not quite. Whenever we give him a bath we see this lump in his chest and the scar down his sternum to remind us, but for all practical purposes, Jackers is back to where he was prior to that episode. For instance, his weight is stabilized and he is growing (an inch and a pound since April 1st)(I’m a bit obsessive and I work around accountants all day, so I keep track of these things). Jack’s PT/OT/ST marathons are back on, and yesterday, while Mommy watched, Jack was able to get up on all fours and hold himself there for a while. You can tell in his eyes he wants to go…mobility can’t be too far away now. (Oh no?!?)

Speaking of his eyes, Rob and I have been noticing lately that there is a bit of mischief in them. Whenever Coops gets close Jack rolls over and grabs him, pulling his hair or whatever he can grab and tries to gum him (or bite, depending on what side of the mouth he has open). Cooper, who is a very good brother, just laughs and pulls away. He gets his revenge later and steals Jack’s toys, causing a crying spell. Jack also has become somewhat demanding. When he wants to be held, HE WANTS TO BE HELD NOW! When he wants to play on the floor, HE WANTS TO PLAY ON THE FLOOR NOW! When he wants to go to sleep, go for a walk outside, have a hug, play in the high chair…well you get the picture.

The only medical issue that is pressing now is his diaper rash. The poor kid has had it for two weeks now. Of course we can never relax and think it must be some weird tropical disease, so we have to go to the doc to get it checked. It’s just a rash caused by the fact Jack has eight (8) teeth popping through right now. I’m not kidding, eight all at once! The pediatrician gave us a special mixture to make up of OTC ointments, which we apply every time there’s a dirty diaper. It seems to help, but this probably won’t be solved until those teeth are chomping away and we're in the poor house from going through so many diapers!

Cooper is just doing great. He is giving us a constant lesson in the often misunderstood language of Coopish, which includes sounds, gestures, finger pointing and face grimaces. He gets his point across though. Coop is a busy boy, who loves playing with his trucks, giving hugs out, waving good-bye, stacking blocks, destroying everything, running into the street, blowing his nose (but then he puts the Kleenex back into the box and not the trash), taking a bath and then climbing out and running around the house buck naked, helping Daddy around the yard (and then running toward the street), going to the park, sliding, swinging, wrestling with Jack and going to “School”. “School” is so cute. He has a little chair in a corner that he pulls out and sits down in. He then expects us to give him puzzles and other games and he figures them out. He expects lots of praise then (which we are more than happy to give). He’ll sometimes be sitting in his school chair just waiting for us to show up to give him work (I wonder how long that will last?).

Things are going good now, just getting into the busy life of toddlers. We’re less than a month away now from birthday #2. Hard to Believe!

Please keep all the kids who have dealt or are dealing with some of life's unfair circumstances in your prayers. They are truly God's special little people.

Friday, May 19, 2006 6:22 AM CDT

Just a quick update...

Jack went back in Tuesday for a blood draw to check one of the proteins in his blood (the one that could indicate stiffing of the heart). The level was half of what it was last week - great news! It appears last week's level was an outlyer or just a poor lab result. His level is still higher than normal, but for him and his history, and the fact that he's being paced on his RV this isn't unusual. We'll continue to watch this going into the future and see how things progress.

Our next clinic visit? - August!

Although we'll probably have a blood draw in a few weeks to check the CSA level.

So, we're back to working through toof's (both boys are battling that now), talking, mobility and celebrating a 2nd birthday!

Yeah!

Sunday, May 14, 2006 0:04 AM CDT

**New photos**

One, Two a huge accomplishment! Jack is counting on his fingers, he can't say it yet, but he knows how to make the sound. As a matter of fact, he has a lot of tricks, he can count to two, show you his feet and hands, smile and wave good bye or hello, and give hugs on demand. After any of these he claps and demands praise from all around with that infectious smile. Sometimes he gets the order of things mixed up though and just wants to clap and get praise before he does his tricks. He's so darn cute who can resist?

Cooper has his own tricks, heck, he can probably do long division by now, but he has a bit of a stubborn streak in him (can't be from me) and will not show you his tricks on demand. He likes the praise, but will only do things when he wants. He does like to play catch with me and has recently learned to switch lights on and off (he can reach them on his tippy toes). We'll often walk around the house after him turning lights and fans on or off, always knowing Coops was ahead of us.

The other day Coop and I ran an errand. He was starting to whine and sass in the back seat. So, I thought I'd pull the ageless parent trick and divert his attention...I rolled the back passenger side window down by him. I thought the sudden noise and wind would get him to be quiet. Coops hunched his shoulders and got out of his car seat straps, leaned forward and pulled the little electronic button to roll the window up. He then looked at me and let out his little laugh. I guess I know who the fool is now!

Jack went to the clinic on Thursday to get everything checked out. Things look good, except one blood test came back a little out of whack. The number tripled from before his pacemaker surgery which could indicate rejection or some type of heart failure. Or, it could just be a bad test. Or, we recently found out, it could just be skewed because Jack is now being paced. Anyway, we'll go back into the Clinic sometime next week to get it checked out. Another blood draw, hopefully everything checks out.

Tonight Mommy and Daddy went out...without the kids...we got dressed up and went to an adult event! It was the 11th Annual Winefest here in the Twin Cities. It's a charity event to raise money for U of M Pediatric programs and research. We've heard it was fun and it was great. First of all they had great food, we had adults around us, wine, wine and wine and some pretty good entertainment. Not bad, but the highlight of the night was the fact that our son was one of the featured "success stories".

The program had a professional photograph of Jack in his Bumbo seat clapping and a little story on his journey. That was great, but then every table had a placecard with Jack on it also. This was great, but after the second course they showed a video. The first image was Jackers, clapping with the biggest smile and nothing but a "I love life" expression on his face. I can't describe what it felt like seeing your son on a 12 foot screen in front of a 1,000 people. Robin lasted about 2 seconds and I maybe another second afterwards, but we were both reduced to tears we were so moved. So proud.

Jack was the first of about 6 success pediatric stories, his section had about 5-6 slides and all were just darling. I honestly don't remember what they all looked like as my eyes were blurred with tears. I'm calling the Winefest up on Monday to see if I can get a copy. I can't explain it, but I have never felt pride like that before. I don't think it's a sin, but boy, oh boy, this parenting thing can do strange things to your emotions.

Anyway, it was a great night and a great event. It raised buku bucks for a great charity and I would recommend it to anyone next year.

Please keep all the kids who have struggled on these tough journeys in your prayers that they may continue to find cures and improve technology to help them.

Happy Mother's Day to all the mothers out there!!

TTFN

Wednesday, May 3, 2006 7:26 AM CDT

Things are just rolling right along, Jack is back! He's fighting with his brother over toys, taking therapy lessons and has learned to count to two on his fingers...

But then again life isn't always smooth...

Yesterday I came home and Jack is crying, his hair is wet because he is so hot and he looks flush. I carry him upstairs and take his blood pressure - good - his heart rate - good - cap refill - good, heart seems fine - he's alert and can be calmed down - good, no shunt problem - check all his scars - no red puffy stuff, probably no infection - good - take his temperature - 101 - shizer!

Call the Transplant office - get him in and let us look.

I was planning on playing with the boys and working on my garage. Oh well.

We get to the U ER -- triage, check in, weight, blood draw, physical examination, x-rays, cat scan, IV starts x 3 (finally got one), blood pressure, pulse ox and EKG. All look fine ... normal range. He temp now is 99. White blood cell count is higher than a week ago when he left the Hospital, but still in normal range. So, give him Tylenol and IV dose of antibiotics and go home and watch him. The Dr's and Cardiologist were great.

Mommy's hypothesis ... 4 teeth poking through the gums.

Mommy's are usually right.

But you just can't take a change with Jackers.

*************

(Poor Coops, he didn't know what was going on. When I first came home I opened the door and heard the running of little feet. He sees me and runs into my arms, smiling and hugging me. He wraps both meat hooks around my legs and won't let go...wanting to play. This is great! I love it! Unfortunately, when I went to greet Jackers all those plans had to wait.)

Friday, April 28, 2006 8:11 PM CDT

Friday Night Update

Jack's been home since Tuesday afternoon now and he has settled back into his routine. Tuesday Evening as I was carrying him in from the van...boy...you should have seen that big smile on his face. He knew he was home and was so happy. Coops was just as happy to see everyone and for his life to settle back down to normal.

Jack almost immediately shed the hospital routine and got back into his home schedule. He loved sleeping in "his" bed, with Mom and Dad by his side and that 400 thread count sheet over and under his body, he felt at home. He has slept just like a baby...just like he should. Letting his mind and body heal and rest. He has been a bit clingy though, demanding that I pat his butt until he falls asleep or he must touch me or Robin while he is sleeping. I usually sleep like I'm in a straight jacket over fear of hitting him or something if I toss. A minor inconvenience and infinitly better than those chairs I slept in the PICU.

Cooper went to the park with the whole family yesterday. It's a rather big park with playground equipment in one section. It also has several large soccer, baseball and football fields all combined. There's a walking trail that circles it and Cooper explored almost every inch. He loved the slides and swings, but they were second fiddle to just running. He happens to have a fetish about running towards parking lots and roads, therefore Dad has to be his constant shepard. Anyway, Coop had the best time just running. As a matter of fact, for the first time in Coop's life, he started to walk. He was so tired he couldn't get those piston legs of his going any more so he had to resort to walking. He found sticks, bugs, dirt, and an occasional little girl, so he had a good time. Last night he went to bed early, didn't make a sound all night and slept late...then took a long daytime nap...I think we're on to something here.

Jack went to the Clinic today to get an Echo. Soon after his pacemaker surgery there was an Echo that showed some signs of dysfunction on his right ventricle. The Dr's thought it was related to the stress of the SVT and him being so up on fluids, so they wanted to wait until he had recovered to see if his heart had "righted" itself. Today's Echo showed good improvement and his internal heart pressures were normal. Great news! We have to go back to Clinic in about two weeks to get everything else checked and to see if we have to make any drug changes. Then we go back to an every 3 month schedule again.

That's about it. Robin and I have got a few hours of sleep and are human again. We are even thinking about all the chores we have to get done at the house.

Thank you so much for the help with the extra prayers. Jack says "You're number one" (he points his index fingers up to show you).

TTFN

Tuesday, April 25, 2006 9:29 PM CDT

Tuesday Evening Update


Last night I went into the family lounge and fell asleep around 11 ish. I told the nurse to wake me if anything happened, otherwise I was going to forgo my usual sitting/ sleeping in the room and go into the family lounge. This place tends to get crowded and noisy at all times of the night, however it does have a couple of chairs that fold out into a bed...Amen! So, having run on empty for 10 days I finally started to break down and realized I needed some rest. So, into the family lounge I went. I slept until 5 a.m. when someone came in and said "Mr. Corbo, your son needs you".

Good thing I brought extra underwear, because those words at that time and in such a deep sleep scared me half way to kingdom come...wherever that is. All I could think of was Oct 22, 2004 when Jack had his little "episode" after his transplant. The nurse that woke me at that time used the same words. This time things were much different, Jack just needed his daddy to pat his tummy and get him to settle down. He then had a "teething diaper", as his mother calls it, and fell back to sleep.

Jack did great and actually got quite a bit of sleep. By the time the morning came around and the Dr's did their rounds, they had decided to take out the IJ line and transfer him to the Floor. The Cardiologist said, I think you should go home actually. Well, we ended up on the Floor so I figured they want to watch him for one more day, no biggy, just making sure his feedings are okay and none of the cultures come back positive for a possible bug he may have caught in his GI.

Robin got the news in the afternoon that he actually could be released today. So, we packed him up and drove him home. You should have seen the big smile on his face when we carried him from the van into the house. He was laughing, smiling and making the #1 sign with his pointy finger. He was so happy to be home and him and his brother were both clapping. It was very cute.

Tonight was busy getting settled back into our house and setting up a routine. Jack's drugs are pretty much the same, up on some dosages and down on others. He has to get an Echo on Friday to make sure his chambers are responding. The Cardiologist expects they are working better than immediately after (or before) the pacemaker insertion. We certainly hope so, so please keep praying for that.

It's great to be home...sleep in a bed...and have the whole family under one roof again.

TTFN

Monday, April 24, 2006 2:20 AM CDT

Early Monday Morning

Jack's on the mend. Sunday he was able to get off the bumex drip as he loss over a kilo in fluid. As a matter of fact, he was starting to get too dry. The poor kid, I gave him a drink of water from a cup and for the next 10 minutes all he did was whine and cry whenever I took the cup away. The boy was thirsty!

Jack also got rid of the milrinone and most of his other diruetics. He's basically back down to a point where we came to the Hospital on 10 days ago, just Lasix.

He's actually hypertensive now, with blood pressures similiar to an adults. So, they are trying to get him back on his Captopril to get that under control. I think it is, but it takes time.

His biggest worry now is the chest tube still stuck in his rib cage and his tummy has been hurting. The tube should come out tomorrow. His tummy, not sure why, but it's been given him troubles today. Probably all the crap that's been put through him and the fact that he's just now getting ramped back up on his feedings.

Hopefully tomorrow he'll transfer out of the PICU and over to the Floor. Home sometime this week.

Coops is really out of sorts. The constant shuttle of his parents in and out of the house, late nights either picking Grandma up at the airport or seeing his brother and just missing his brother has really got him confused. He'll be fine as soon as Jackers, Mommy and Daddy are all in the same house again and we get our routine down. They both thrive on that routine.

As you can tell by my posting, my schedule is all out of whack as well. Hopefully this week brings back calm and recovery. Thanks for the prayers and support, keep them coming!


TTFN

Saturday, April 22, 2006 8:43 PM CDT

Saturday Update

Jack continues to improve, albeit sometimes slower than we'd like, but then again we don't have tubes sticking in our chest or just get our chest cracked open. Today he continued to PEE and drain. His breathing has improved vastly today and is on just a little blow-by, otherwise on room air. He has started his feeds, almost completely off the milrinone and has lost one of the diuretics. All in all a good day.

His weight was still up a kilo from what he came in here at. So, he's about half way back down the ladder. Although he's in a little pain, and is getting some pain medicine for it, he's a trooper and at times showed glimpses of the ol' Jackers. No clapping yet and no smiles yet, but some alertness and picking things up that let you know he's coming around.

Hopefully tomorrow he gets the chest tube out. He continues to drain a little bit into it, so they are hesitant to remove it. We have the opposite problem with his blood pressure now, being too high, but there is a plan with his drugs to bring that under control. So the name of the game is (1) PEE, (2) Get Chest Tube Out, (3) Get drips out so they can remove the IJ line and then ... HOME!

I almost hate to mention that word over fear of a jinx.

Coops came in and saw his brother this afternoon. He was more interested in the Elmo video playing, but Jack enjoyed watching Coops. On the way into the Hospital Coops visited with Grandma and me just telling us this intense story. We were both so engrossed in this fantastic tale that I almost got lost on the way in. I wish I could tell you what this yarn was about, but I don't quite know how to translate Coopish yet.

Thanks and continue to think PEE!

TTFN

Friday, April 21, 2006 8:32 PM CDT

Friday PM Update

Jack's room is a lot less crowded tonight. His vent machine is gone, most of the pumps, his art line is out and so is the foley. We're in the process of weining him from the bumex now and hope to change to an oral diuretic soon. Once that happens he'll get his IJ line removed also and have a lot more room to move. He's also restarted his feeding and has had the bowel movements to prove it. The name of the game continues to be pee. He has loss almost a kilo in the last two days, so we're roughly half way there. So all in all, good progress.

The best part today was when Medtronic and the Heart Electrician came and tested out his pacemaker. They determined that his rate could be turned down and he could maintain his pressures. Excellent. One of the leads to his atrium isn't always making contact (a lose wire) which causes his ECG to look strange at times, but apparently they made the adjustments in the pacemaker for this and things are working fine. As soon as he gets more fluid out of his body he may be able to be adjusted again. To tell you the truth this was my biggest worry, that they'd determine they couldn't make the changes and he'd be stuck with this high heart rate. This could eventually lead to an enlargement of the heart and we'd be back to where we were in the fall of 2004.

So Praise the Lord!

Jack has a ways to go and all of this trauma will take some time for his body to recover from. However, everyone on the team, including his parents are very optimistic.

I went to the campus barber yesterday (his name is Jake, and says it's close enough to Jack, so he has had a special place in his heart for my boy for quite some time) and I noticed large amounts of gray in the clippings. A few years ago, before kids, I would have had a hard time noticing any. I can't run from it now. Jake said don't worry, you can't even notice it.

Today I went home and spent some time with Coops (and took a nice long nap in a BED!...I've been sleeping slouched in chair for an hour or so here and there for the past week). Coops was happy to see me and we played. I think all the ruckus of the past week has really left him bewildered as to whats going on. Hang in there little buddy, we'll get back to normal soon. He's a good boy and has recently learned how to climb up on furniture. He's so proud he'll sit there and tell you all about it in Coopish, which is a new language I've just learned.

Anyway, things are better, moving in the right direction and pray it continues.

TTFN

Friday, April 21, 2006 7:24 AM CDT

Friday AM Update

Jack had a good night last night, peeing very well. He goes in a little cycle, sometimes putting out 30 cc's every two hours (my blood pressure is stratospheric then) and then 150 cc's every two hours (my blood pressure is well grounded then). His weight actually went down in the 24 hours of yesterday, so now's he's only about a kilo and a half over his dry weight. Blood pressure is steady and everything looks fine, just recovering.

Hopefully today will continue this pattern. We hope to get the vent removed this morning and with that a few IV's and the damn Art line that has been a worrisome nat for some time now.

I got five hours sleep last night, two of them in a row, the most since in over a week.

So, I think things are on a rebound. Hopefully his heart and it's function are in the same way. Medtronic is coming today to test out the function and hopefully dial the pace down some.

TTFN

Thursday, April 20, 2006 5:16 PM CDT

Thursday PM Update

The last twenty-four hours have been full of ups and downs. When you consider where we we're 24 hours ago, Jack has made some progress. However, during this time Jack has gone from producing a lot of urine, to producing none, to producing tons again. Currently he is doing fine. For the day he is negative, yeah!, first time in six days. He has almost two kilos to get off, but a least it's a start.

Our emotions kind of follow Jack's pee pattern...sounds a little strange I know, but it's true. I looked back at some of the postings during some of his prior surgeries and it's the same pattern. Really, things don't start to really look good until the third full day post-op. So Friday should be the magic day.

Jack's blood pressure is doing better and is much more steady. I guess that's where our frailness comes into play, watching that damn monitor go up and down and up and down...knowing that he's played this drama for us before and scared the crap out of us.

Our little tough guy though keep trucking along. He looks good, feels good, his labs and gases are good and his echo and heart function are better. We won't know the full extent of how his heart is functioning until we can get the fluid out and his heart can settle into pumping inside a normal body. The manufacturer is coming in tomorrow to check out the pacemaker and make sure it's functioning right and to see how his function is. We're praying for a good sinus node. Also, with that we can start to dial his heart rate down some.

He's an inspiration and my hero. He's proved it again.

TTFN

Wednesday, April 19, 2006 6:35 PM CDT

Update...

Jack had some episodes of low blood pressure last night and this afternoon. This is compounding to his difficulty expelling fluid from his body. To give you an idea, he entered the Hospital last Friday weighing about 22 1/2 pounds and weights close to 27 pounds now. This extra fluid is causing him to have difficulty breathing, his heart isn't where it should be and delaying any real assessments on the rest of him. Due to this fluid, he is on the vent again today and will be reassessed tomorrow AM.

This fluid retention is a factor of low blood pressure, his sedation and coming off anesthia. He has always had this issue after each of his surgerys. So the name of the game is pee. I've prayed to the Lord for many things, including pee before, but that's what I'm praying for now...keep the pressures up, the heart steady and improving and pee, pee, pee, pee, pee...

I went home this morning to catch a little sleep. I opened the door and Coop was eating his breakfast in his high chair. He saw me and got all excited, screaming and kicking his feet. He got out of the high chair and ran over and hugged me. We played for a couple hours and finally the fatigue of the past week caught up with me and I had to get horizontal for a while. However, seeing and hugging Coops was a huge lift for me. I've said it before, but I'll keep saying it, I know why God gave us Coops to take care of. He is such an uplifting part of our lives.

Keep Jack and Coop in your prayers and ask for more pee tonight.

TTFN

Tuesday, April 18, 2006 4:25 PM CDT

Jack was taken down to the O.R. about 6:45 this morning. He had an especially good night and was in high spirits all night. I was sleeping in the room and would just start to enter some very much needed REM and I would hear this "ahhahh". I would wake up and there were these two big blues eyes looking at me. I'd get up and look and he'd be rolling over, clapping and smiling and just having a good time. His little claps were so special because he tried to do it dispite the fact he had an IV and board attached to his right arm.

We went down to the O.R. and waited there until around 8:30 when they wheeled him out to get his surgery. Our stomachs were tied in knots and we went to the waiting room to WAIT. Every minute our stomach got tighter and tighter, just waiting. We got a call around 10:30 saying they had Jack all set up and were ready to crack his chest(for the second time in his little life).

Our next call came around noon saying the Surgeon had finished her work and everything seemed fine. Jack was steady and the Surgeon would be out to talk to us as soon as she got his chest closed.

She came out an hour and half later and said Jack did good. His heart was a little stressed out from the events of last week and probably from sub-optimal performance for some time. However, she was hopeful that it would fully recover now that it was in a better rythm and could function easier. It make take some time, so we may end up coming to clinic more often for a while, but it should work out.

We got back up to the PICU around 3ish and saw Jack. No where near as bad as the transplant, but you know he still has tubing and wires sticking out everywhere. We thought we could take the breathing tube out today, but Jack is considerably "waterlogged" and his liver and kidneys need some time to catch up. So, they're going to keep him on the vent overnight, put some extra diuretics into his system and get his weight down. This will releive a lot of pressure on his system.

So, in order to keep him from removing the breathing tube on his own, we have to sedate him. Jack got his first dose of phentanol and being the strong boy he is, he just shook it off. Robin was standing over him singing the ABC's and he opened his eyes and started to clap. I came over and held up my finger saying you're #1 and Jack opened his eyes again and started to clap. No one could believe it, a kid who just came back from major surgery, drugged and still on a little anethesia, had the strength to respond to his parents and perform a physical act. But then again, that is Jackers!

Jack has some hurdles to get over before he can come home. He has another little bump in his tummy where the pacemaker is. However, we are hopeful that before next week starts, he'll be home and on his way to recovery.

So the name of the game, again, tonight is pee. Jack needs to pee and get this excess fluid out of his body. Then he needs to start to eat, get chest tubes and pacer wires removed, art and central lines removed and make sure his heart is where it should be. Sorry to say, we're pros at this so we know how to coach him along this path.

Stay tuned...

Sunday, April 16, 2006 7:27 PM CDT

Update - Sunday Evening

Happy Easter!

Jack had a restless night as his tummy was giving him problems and he was sick of the pacer wire sticking out of his jugular. He is very fluid up and is puffy, having a difficult time expelling waste and fluids and his pulse oxy stats makes it look likes he needs a little oxygen. Also, he started to run a mild fever early this morning. At 7 a.m. they came in and drew blood to check a variety of things, including to see if he caught a bug while here in the Hospital.

The results were pretty normal and nothing to be too concerned about. It doesn't look like a bug, at least nothing yet, and his blood gases all look pretty normal. He is starting to pee a little better and is getting around. He has terrible gas pains and this is the cause of most of his discomfort. The pacer wire in the neck as well as the line in the neck and peripheral line in his left arm were all removed today. Robin said Jack was so happy to get the wire out of his neck he started to clap.

Jack's body has reacted to anasethia like this before. So we just need to nurse him back to his normal self. The only problem is, by that time it's time to go under again. The poor little boy. We're looking forward to getting Tuesday behind us, but we're not at the same time.

Coop is doing fine. I went home and played with him during the afternoon. We both needed it. We played, napped, went to the airport, wrestled, ate and did everything together. It was fun.

We are living in a logistical nightmare as we try to maintain some type of order back home for Coop and be there for Jackers. Friends have pitched in and we're coping. Grandma is coming into town tonight to help out so that will be a great help in this coming week.

Thanks again, happy, happy Easter and Praise the Lord.

Saturday, April 15, 2006 9:37 PM CDT

Update--Saturday evening

There are four simple things you need to know about Mr.Jack Corbo. (1.) He loves drama. (2.) He never met a camera he didn't like. (3.) He's the happiest kid you'll ever meet unless you see him in a hospital or clinical setting and WATCH OUT. (4.) He loves women, but nurses outfits, white coats and stethoscopes are not an attractive piece of the package.

Today was a fairly uneventful day. Jack has been stable all night long and is starting to get rid of the excess fluids in his body. He entered the Hospital yesterday weighing 22 and 1/2 pounds and weighs over 24 now. So he has a ways to go.

We both got him to smile ocassionally today and his vitals have been very steady. He needs the pacemaker to put his heart where it should be and just to keep it safe, it's just unfortunate that it means another surgery,and breaking his chest open again and more pain drugs. With luck on our side, we'll be home this time next week. Docs said he'd probably leave a couple days after the surgery, but we won't hang on that. The biggest issue is it's a holiday weekend so he has to wait around in the hospital for a scheduled surgery until Tuesday. It seems this big shock to his heart has really screwed it up. So he can't go home until surgery because he needs to be watched. Jack thinks it all STINKS. How will Peter Rabbit know where to find him?

The pacemaker is not a huge surprise to us. It's always been a possibility looming, but we decided to kind of wait and see. The abnormal rythm Jack developed was the signal to revisit the idea. Unfortunately, the shocking incident kind of threw things out of control and made the issue more emergent.

Thanks to friends and families Coops is being taken care of just fine. Today around noon I was dozing off in Jack's room when I heard a familiar footstep and devilish laugh. I look outside the room and there Coops is running around. After all, the hospital is full of so many fun toys!!I go over and pick him up and he hugs me. It's was great, I missed him so much the last day or so and apparently he did too.

I took him home as Rob took the day shift with Jack. Coop and I went home and both took a nap trying to catch up a little. After a shower and shave I returned to the Hospital to take the night shift.



Saturday, April 15, 2006 4:34 AM CDT

Early Saturday Morning

My journal entry yesterday was probably premature, Jack had an episode in the afternoon that was similiar to the one he had five days after the transplant. His heart rate suddenly went out of control, racing into the high 200's. His face was flush and red, and he was not doing good. He was very upset.

A crash cart was wheeled into the room, just in case.

Chairs were pushed out of the room and we were moved aside by the growing crowd of docs and nurses trying to figure out what to do.

A total of 12 people were running everywhere.

They tried to scare him out of this by first suffocating him with a plastic bag. That didn't work. They they tried ice to shock him back into a regular rythm. That didn't work. A drug was tried twice that stopped his heart for a second or two worked, but then his heart raced again into the high 200's. Finally they found another drug that worked and snapped him out of it. Five minutes later the room was back to normal and we were holding Jack.

Jack's heart rate was better, but continued to jump up and down throughout the day. Then, around 9 p.m. he became very, very mad and started to thrash around his crib. He was pulling on all the hoses and lines attached to him. I had to pin him down and so did a nurse to make sure he didn't rip the line out of his neck. We had to sedate him and have done so since with Tylenol 3 and Versed.

The night has been uneventful since this. He seems to be sleeping better and his digestive system is starting to work, so that always is a good sign.

Before the Dr's went home last night they had a big conference and determined that Jack definitely needs a pacemaker. They'll use that as a safety net for his heart pace and rythm and use a new drug as a throttle control. The cocktail still has to be worked out. Tuesday he'll go under for an approximately four hour operation to place a pacemaker in him. Everyone says it's not that big of a deal, it's not uncommon for transplanted people to need this and that he'll be out of the Hospital by next Thursday/ Friday. In the words of his surgeon, "it's no big deal."

Tell that to us again.

Saturday, April 15, 2006 4:34 AM CDT

Early Saturday Morning

My journal entry yesterday was probably premature, Jack had an episode in the afternoon that was similiar to the one he had five days after the transplant. His heart rate suddenly went out of control, racing into the high 200's. His face was flush and red, and he was not doing good.

A crash cart was wheeled into the room.

Chairs and us were pushed out of the room

A total of 12 people were running everywhere.

They tried to scare him out of this by first suffocating him with a plastic bag. That didn't work. Ice to shock him back into a regular rythum. That didn't work. A drug was tried twice that stopped his heart for a second or two worked, but then his heart raced again into the high 200's. Finally they found another drug that worked and snapped him out of it. Five minutes later the room was back to normal and we were holding Jack.

Jack's heart rate was better, but continued to jump up and down throughout the day. Then, around 9 p.m. he became very very mad and started to thrash around his crib. He was pulling on all the hoses and lines attached to him. I had to pin him down and did a nurse to make sure he didn't rip the line out of his neck. We had to sedate him and have done so since with T3 and Versed.

The night has been uneventful since this. He seems to be sleeping better and his digestive system is starting to work, so that always is a good sign.

Before the Dr's went home last night they had a big conference and determined that Jack definitely needs a pacemaker. They'll use that as a safety net for his heart pace and rythum and use drugs as a throttle control. The cocktail still has to be worked out. Tuesday he'll go under for a four hour operation to place a pacemaker in him. Everyone says it's not that big of a deal, it's common for transplanted people to need this and that he'll be out of the Hospital by next Thursday/ Friday.

Tell that to us again.

Friday, April 14, 2006 2:54 PM CDT

Jack went in for his conversion this morning. We had to have him to the Hospital by 6:45 a.m., so you know what that means. Jack, true to form though, was the happiest little early bird you could imagine. I woke him up, got him dressed and brought him downstairs to wait for us to finish up getting ready. He was just sitting in his high chair, playing with his blocks and clapping at himself because he was so proud. Big smiles.

We got to the U and Jack was taking back to pre-op. We got him ready and played with him. I carried him down to the OR and stayed with him as they put the gas mask on and he drifted to sleep. I had to be in the full surgery get-up and remember doing this a couple times, but forgot how painful it was to watch your little son go to sleep and then leave him knowing the next time he awoke he would be in pain...knowing that he won't know why and why did Daddy leave me?

The procedure went fine and we discovered he was in aterial flutter. They shocked him out of it, but noticed that his sinus rythum was not normal. Not knowing if the anesthia was the reason or if this was an underlying reason for the flutter in the first place, it was recommended that we place a temporary pacemaker through his jugular and observe him overnight. The worry is that his rythum is off enough that he won't make enough blood pressure to keep his body going, especially while sleeping. If that is the case, then a permenant pacemaker is the fix.

We of course think about this and it means his chest must be cracked again. Which means he'll be set back some more time in his development. And more surgeries and more pain, etc...

We're up here now in the PICU and watching Jack come out of the anesthia. He has this big wire sticking out of his neck, which if needed, they can pace his heart with. We wait and pray...

Being up here, the sights, the sounds, the smells, the memories are almost too much.

Jack is doing okay, but doesn't like being here. He is still coming too and is very grumpy (he hasn't eaten since 2AM, so that's part of the problem).

Coops is at home playing with Ms. Martha and loving it.

This is somehow related to this being the most holy of weekends, so I know He is with us. Nevertheless, I again ask for your prayers that Jack turns out fine and we're home in church for Easter services on Sunday...instead of fighting the Hospital blues, we'll be struggling to keep two toddlers occupied through the Mass.

TTFN

Tuesday, April 11, 2006 8:59 PM CDT

Just a quick update...

As you've read last week, Jack's heart has an abnormal rythm...his upper chambers are beating faster than the bottom ones. Not sure if it's atrial fibliration or a flutter. Today he was supposed to go in for a throat echo (through the esophagus) and a shock to the heart to re-synchronize the rythm. All systems were go and we made it to the hospital in time -- 11:30 a.m. At 2:30, while still waiting, the power went out at the hospital for the third time. We left then and will try to reschedule later this week...knowing our luck it would happen again when Jack was under.

Anyway, since Jack was going to be under he couldn't eat anything for six hours prior. So we stopped his feeding at 4 a.m. and only gave him water with his morning meds. By 2:30 in the afternoon he was fit to be tied he was so hungry (his father was too, and almost as grumpy because of it).

So, we postponed and carry the stress for a couple more days and hopefully, Good Friday will bring Jack good luck.

Meanwhile Cooper held down the fort with our good family friend Lynn. He didn't act too upset that we left without him. He had a leggy blonde at home with him--he was too busy flirting. We think we may have a problem on our hands...

Please keep Jack in your prayers as he undergoes this procedure. Pray the doctors don't make it worse.

TTFN

Tuesday, April 4, 2006 9:08 PM CDT

It's been a busy couple of weeks...

Jack’s little heart rhythm issue has caused us to go to the U several times, last week brought good news through a biopsy that he was not rejecting his heart. However, the heart halter did show that his rhythm was off, with his upper chambers beating faster than the bottom ones. Why? – who really knows. However, the fear is that over time this would cause his heart to possibly develop another myopathy and enlarge or a clot could form in the heart and travel to the brain and cause a stroke or he could be fine and the rhythm would correct itself over time.

We met with the heart electrician this week and confirmed all of this for us. Jack is not in danger now, but we can’t afford to do nothing either. So, the course of treatment is to start with a cardiac conversion (known as cardioversion) and shock the heart. This involves a biopsy type procedure. At the same time they’ll do an esophageal recording and echo to gather data on the functioning of the heart and make sure no clots have already formed. Fun…yeah right…but better than more drugs or a pacemaker which would be next if this didn’t work. So, praying hard and hoping that when we bring Jack in next week this works!

Meanwhile, Jack saw the ophthalmologist today and checked out his eye surgery. “Vast improvement” from six months ago was the report. One of the eyes does still drift some, but Jack corrects it himself and that is great. So, the danger of another corrective surgery or glasses seems pretty remote right now.

Later this week we have immunizations for Cooper and of course the PT/OT/ST schedule never stops.

I shouldn’t complain too much (but who else is going to listen?) since all of this is really helping the boys. Jack is just a little wiggle worm and is all over the floor now. When you pick him up you can feel the strength in his back and all the energy he has gained in the past few months. He’s packed on 2 pounds and 2 inches since Christmas and is doing just wonderful. He has also started to eat things besides mac-n-cheese and drink (with assistance) from a cup. He thinks he’s big stuff, since every time he does this he claps for himself and smiles. And finally, don’t want to jinx myself here, but he’s sleeping through the night and slowly starting to take longer naps during the day (he was in the habit of taking Jack Naps, which are 15-20 minutes long, then having a melt down around 4ish because he is so tired).

Coops is doing fine. He’s packed on five pounds and a half inch since Christmas, topping the scale at 32 pounds a few weeks ago. Since then we’ve modified his diet a little to help motivate him towards different foods and he’s slipped back to 31 pounds. He’s no tube of lard though, he’s lean and mean and just plain solid.

He’s also quite a stinker.

I don’t think he got the memo that the terrible twos don’t start for a couple of months because he’s got a little attitude. He does not know how to walk, only run, and must…MUST…touch absolutely everything! That includes my home theatre system I put in and mess up the timing on my fancy smancy remote control. Everything is funny also. Throw food on the floor … laugh. Mess Daddy’s TV up … get my hand slapped … laugh. Go over to the water dispenser and dump water on the floor .. get my hand slapped … laugh and clap. Throw toys and hit Jack … get my hand slapped … laugh and clap. If he wasn’t so damn cute …

The other night Robin made the mistake of going into the lion’s den after the cubby was down sleeping for the night. She went to check on Coops and must have made some type of noise, because he woke up, looked around, laughed, then went back down pulled the blanket over his head, butt up in the air and went back to sleep.

Anyway, it’s always an adventure around here with the boys. (And our new house…but that’s a different story.) Grateful for everything, even though sometimes the daily grind may muck up our smile a bit.

Saturday, March 25, 2006 3:45 PM CST

**Check out the crazy rabbits**

Just a little update...

Things with Jack's heart rate are still where we were several days ago. No rejection, but the beat isn't exactly normal either. We finally got our appointment with the Heart Electrician on April 3rd, so we'll see what we'll have to do then. There is fluxations in the heartrate throughout the day, which is normal. They were worried that it was stuck in overdrive, which could lead to problems if left stuck (e.g. stroke another cardiomyopathy). All worse case scenairos I'm sure, but we've been down that path before and are a little jumpy. So, we'll just keep a close eye on Jack and go see the Electrician and see what we need to do.

In the meantime, Jack is doing great. It's hard to call him Jackaroni now, because his diet has expanded to Tapioca and Butterscotch pudding. He is even sucking on Biter Biscuits now...and drinking! from a sippy cup! I know this may be a ways off, but we can finally see that someday we won't need that mic-key anymore...yeah!

On the physical side, Jack is making great progress also. He's babbling more and more, rolling across the floor, sitting up pretty much on his own and you can just feel the strength in his back now. He's made great progress just since Christmas. A big thank you to his PT/OT and "teachers" and of course Mom, for helping him so much. Finally, his weight is up close to 22 pounds now.

Cooper is matching the impressive performance of his twin. Coop has smashed through the 30 pound mark and last time we weighted him (last week) was over 31 pounds! He has these huge bearlike paws and is faster than greased lightning. He is just everywhere and into everything. He is making more and more noises and is close to a few words. It's a little strange, we understand what he wants but I don't think anyone else could.

Cooper also has a little naughty streak down him. He loves to get into things he shouldn't, like his Mother's office. He'll go in there and cause a ruckus and get a big "No-No" from us. Sometimes he even gets a little peck on the butt. He just thinks it's funny cause he'll run out laughing and clapping his hands as if he's just done the world a favor. He's still our big clown.

We're eagerly anticipating the Spring and a chance to finally get outside.

Thanks for being there, check out the pictures Robin has posted and stay tune...she's bought the best Easter Bunny outfit I've ever seen...

TTFN

Wednesday, March 15, 2006 4:36 PM CST

**New pictures as of 3-24-06**

Well the biopsy results were in, and after a very stressful day at the hospital with two antsy toddlers, it was well worth the wait. No rejection!

Jack's heart function has changed and it is not normal, but at least we know it is not his body rejecting the heart. We're scheduled to see the electric heart doctor (I won't even attempt to spell the long version of this type of doctor) on Monday to try to get some answers as to what is happening and what to do about it.

So, after a stressful week in which we were wondering if Jack was rejecting his heart, or it was misfiring so much that it was going to cause a stroke, our furnace blew up and the snowblower not working after the biggest snow storm of the season, we returned home to a warm house with a clean driveway and most importantly, two great kids.

TTFN

Tuesday, March 14, 2006 2:02 PM CST

The halter test showed good variations in Jack's heartbeat throughout the day, so good news. His heart rhythm isn't "normal", but apparently it's not "abnormal" either and something he can live with. So all and all, a pretty good day. They would still like to do a biopsy to confrim, once and for all, that there is no rejection issue. All indicators point to NO, but there are instances where rejection can be asymptomatic apparently. So, we'll be safe and do the biopsy to make sure there isn't anything, the chance is just too big to do otherwise.

TTFN

Monday, March 13, 2006 6:35 AM CST

Sorry I haven't updated for a while. Here's where we stand as of Monday AM.

Jack's heart has definitely changed it's behavior. He was having a heartbeat in the neighborhood of 70 bpm pretty much since he came home from the hospital. For a while everyone was worried about it and thought that a pacemaker was going to be necessary. However, we monitor his heartbeat and pressures everyday, the beat was always strong, steady and he seemed to be fine with it.

A few weeks ago we started to notice he just was stronger, more active and was doing all kinds of physical stuff he couldn't before. About the same time we were told that we could cut back on taking his vitals to once a week because he was so steady. Well, Jack continued to make huge strides in physical therapy and was babbling and everything. When he would go to sleep at night, he would sleep very deeply, as if he were just plain exhausted. Which he was.

After the heartwalk I took his vitals and noticed his heartbeat was in the 140's. Wow. I took it again the next day... 140's. Wow, could this finally be the event we've been waiting for. This is a normal beat range for someone his age. It would explain his increase in activity and energy and was excellent news. I took it several times that day and was really excited. Maybe his heart had finally recovered from the trauma of the transplant? Maybe his body was finally fully growing into the heart?

I called the transplant coordinator and they wanted us to bring him in to check...get an Echo. This was probably good news, but could also be a sign of rejection ... the sudden increase in bmp that is. We brought him in and the echo showed no rejection! yeah!

But, you know that can't be the end of the story. They wanted an EKG and wanted to see if the heartbeat changed during the day at all, like it should (e.g. when you're sleeping the heartbeat should go down as the heart rests). The EKG showed nothing abnormal, but that's only a snapshot. We then scheduled a time a few days later (last Friday) to come back in and get a halter put on that would monitor Jack's heartbeat all day long (24 hours). In the meantime, I bought a stethoscope and we started to count Jack's heartbeats every two hours to see what happens.

Before I bought the stethoscope we tried to count using our fingers. We didn't know if it was acurate or not. However, even while he was asleep we were getting bpm's in the 140's. I go the stethoscope and we took it every two hours...including throughout the night. We seemed to get some variations with this method. We're still not 100% confident in our skills in this area, but I think there are some variations so we feel a little better.

We go in this morning to get the halter results to confirm.

So, either Jack has finally grown into his heart and we have great news. Or, Jack's heart function has changed and he has developed sometype of electrical short in it. Which then would require, we don't know, but possible a heart cath and an electrical shock to the heart to get it back in sync. Or, who knows?

There's a little anxiety in the house today. We're on the edge.

Monday, March 6, 2006 8:25 PM CST

**New pictures**

It's been over a week since the Heartwalk and things are still going pretty good.

Cooper is just growing up so fast. He is curious about everything and learns so fast. He definitely has more of a "mechanics" mind, in that he is fascinated in how things work and are put together. It's fun to watch him explore his world. He has the word "oh-oh" mastered now and babbles quite a bit, he'll probably start stringing sentences next week.

We've talked and Jack has seem to life another veil in the past two weeks. He is stronger, moving all over the place now (a scoot, crawl mix) and just is more energetic. He sleeps just great also and has a lot more energy.

On Saturday I was taking his vitals (we're at once a week now, instead of everyday) and noticed his heartrate was twice what it is normally. I didn't think much of it because he had just spent three hours on and off crying while we went to the home and garden expo. I took his vitals again on Sunday AM and PM and noticed the same things...a heartrate in the 140's where he was averaging in the 70's. We called the transplant clinic and reported a change in his heart function and they want us to come in tomorrow for an echo.

We think, judging by his behavior, that this is what we've been waiting for for the past year . His heart rate is finally up to where it should be for someone his age (maybe a little high??) The spector of the pacemaker seems silly now. He is full of energy now and looks absolutely healthy. Of course, the increase in heartrate could also be the sign of a form of rejection. So, to be on the safe side, they want us to come in tomorrow and check things out with an Echo.

It's a little scary, you always have those feelings in the back of your mind, but on the other hand, the upside of this is fantastic.

We'll be praying hard tonight.

p.s. I'm a huge Minnesota Twins fan and tonight we lost one of the best. Thanks for the memories Kirby. He has a special place in my heart, not for his behavior on or off the field, but for the fact that he became an organ donor upon his death. That's the spirit of giving.

Sunday, February 26, 2006 11:46 AM CST

**New pictures**

Hey, have you seen this morning's St. Paul Pioneer Press? There Jackers is, a big picture on the front page with his new pal Ellis, as they participated in their first American Heart Association's Heart Walk. It's a great picture, Jack's reaching out touching Ellis. Ellis is waiting for a heart, so Jack was telling war stories and what to expect. It was great meeting Ellis' parents and many others.

Jack is getting much better with crowds, he did great throughout the walk. He even let Rose hold him and he laughed and giggled for most of the trip. Andrew, a fellow transplant's father got to hold Jack also, and he did fine. A few months ago that would have been taboo and he would have let us known.

Coops did great too, couldn't believe that there are that many people in the world, as he pretty much lives in his little house in Inver Grove Heights only.

The Pediatric Heart Transplant team for the U was the #1 fundraiser for the entire walk (at least as of the Walk on Saturday). And let me tell you, the Mall of America was filled to the brim with walkers early Saturday morning, so our team should feel pretty darn proud.

Anyway, if you get a chance check out the Sunday paper. It's a great shot of Jack and Ellis, then further in, on page 3, is a very cute picture of Ellis. He's just a few months older than Jack.

Thanks again and we'd like to ask for some special prayers for Ellis as he is still waiting for his heart.

P.S. See the links below to the pictures and article in the Pioneer Press on 2/26/06

P.S.S Thanks to all who supported the American Heart Association and our participation in the Heart Walk!

P.S.S.S Organ donation is the ultimate selfless act. Please consider leaving your legacy behind and let your family know your wishes.

Sunday, February 19, 2006 10:16 AM CST

A year ago we were busy trying to set up a routine for Jack, who was barely home a month from the Hospital. We were in the midst of the narcotics wean, still using oxygen some nights, on more than 15 drugs and Jack had yet to master his head control. We were just in the midst of deciding to build and move to a new location and Coops was just learning the tricks of "cycling" his little legs.

Today, Jack is no longer a narcotics feind, is on 8 drugs, 3 of which are "whiffs" and will probably be eliminated this spring, we still take blood pressures and weights every night, but probably really don't need to and Jack is rolling around and HAPPY, HAPPY, HAPPY!

Cooper is running everywhere, exploring and is a little mechanical whiz as he figures out how to take things apart (not put back together yet).

What a difference a year makes.

Jack's results from his "clinic" came back on Thursday...everything looks fine. His echo on the heart shows no change from last time, it's functioning well and definitely supporting his lifestyle. His lungs, liver, kidney's etc... all appear to be working fine. The decision was made not to reduce any drugs now because we are in the midst of the cold-n-flu season, which from what I've heard is very bad in the PICU...filled to the brim with little babies with RSV. Scary, Scary, Scary for us. We have heeded our pediatrician's advice and lived liked hermits this winter to avoid germs. Of course, Mommy is a cleaning feind herself, so it's hard for a germ to survive in this house anyway. We've even gone out and put in a UV filter in our furnace to kill airborne germs. It seems to be working (knock on wood), no one in the house has been sick yet this winter, except for occassional sniffles and the like, no full borne illnesses yet! (Thank you God!). This has really helped Jack.

Jack continues to get therapy (OT/PT/ST) 3-4x a week. It's helping quite a bit, you can feel him getting stronger as you pick him up. He also for the first time ever, bore his weight on his legs. With the help of a big exercise ball, Jack was able to support his body on his legs. I don't think he knew what he was doing, but it certainly was cute. Rob and I can't wait to see two little boys running around the house..it'll be a very, very special day and an answer to many prayers.

The good news on the clinic and therapy fronts was buttressed by good news from the neurologist. She took a look at Jack on Thursday and said "he's all there!" More prayers answered! He's mentally developing fine, probably not back to his chronological age in all aspects, but moving fast! His only real lag is in his gross motor skills -- getting his muscles to move and be strong enough to make him mobile. That's the goal for 2006.

Cooper continues to be the best medicine. The two of them share toys from time to time, sometimes fight and most of the time compete for their parent's attention. The way things ought to be. Coops has passed the 30 pound mark and is wearing size 3T clothes! If you can belive that. He just doesn't stop growing! He is not fat by any stretch, just big, strong and solid. I call him the walking brick. He looks like a puppy, with these big oversized feet and hands. His favorite game is chase Daddy (my new favorite game also!) and we run and run around. He eventually catches me and drags me down by binding up my legs with his hands. (A great tackling form, as I remember from my football days.)

Life in Corbo land. Not too shabby!

P.S. Tomorrow, February 25 is the Heart Walk. The Corbo's will be walking in honor of Jack's Angel donor. Please think about organ donation on this day. Please think about leaving the legacy of LIFE behind. Remember, you can't take them with you!

Tuesday, February 7, 2006 6:27 PM CST

**See New pictures**

Wow, almost three weeks since my last post. I don't know where the time has gone. We live in this groove where I go to work, Robin takes care of the boys during the day and manages all the therapist visits to the house, then I come home and take of the boys in the evening and at night. Then we repeat, over and over again. In many ways it's very nice. . . it's very normal . . . the boys are thriving in a routine and we're doing okay also.

In the last three weeks we had the 18 month checkup for both boys. Cooper has made it to the 90th percentile in his peer group for height and 80th for weight. He has just sprouted. There's very little fat on the kid. He is built like a brick. He's jabbering and getting into absolutely everything, keeping us running and usually up at night once or twice. He has grown a number of toofs, including a molar. . . I think his total is up to 11 now!

Jackers percentiles for weight and height are behind, but he is holding his own and its seems as if he's right where he should be, roughly 7 months behind. Which is understandable. He has turned into a chatty kathy, with little recognizable sounds, but lots of noise coming from that cute mouth. He has grown four toofs, and according to the Pediatrician, has 6 or 7 more ready to break through anytime now. We suspected that, considering some of the pain he's had and the knawing.

Jack's still takes most of his nutrition throught the mic-key, but is starting to let more and more food through those tight lips. Of course, Macaroni, get's a free pass all the time. His PT/OT/ST is helping and he's getting noticably stronger. The goal is to have him walking by Christmas time; which would be quite the gift to us!

In many ways things are normal and settling down, but I would be a liar if I were to say that we don't feel as if someone is going to pull the rug from underneath us at some time. It's that constant unease, worry and fear of the unknown that wears you down over time. This Thursday is Jack's clinic visit, and of course that is what is causing these emotions to stir a little more. We expect to have a good report (no biopsy this time, thank God!) and hope to finally get Jack off some of the drugs he's on.

However, you read things and you think...you lie in bed at night with that little bugger next to you and you think, you see him smile and giggle and love life, and you think...you can't stop thinking what is the path the Lord has in store for him now? You read reports that has transplant recipients living 20 years or so. That's just when life starts, when Jack would be in his early twenties! Of course they say, well we've only been doing heart transplants a little over twenty years so that's all the data we have...drugs and therapies have gotten better and we expect the results to improve as well...which they have. Also, who knows where medical science will be in twenty years? Stem cells to mechanical hearts all offer great opportunities. Still, you look at the statistics and it only goes to twenty years, and you worry.

Then you look at Coops and see him growing up, he already loves his brother dearly, how could he ever carry the burden if something happens to his brother? How could we?

We're out of the crisis mental state and into the chronic nuisance nag state. It's not as if we have any reason to suspect anything will happen to Jack. It's just that damn little nuisance thorn in the side that will not go away.

We try to be optimistic, there's every reason to be! God has shown us the path and will in the future as well.

I'll be glad when this clinic visit is over.

I guess that's one of the reasons why we feel so strongly about the American Heart Association's Heart Walk. We want to raise awareness and money to help in this area. In can only help people and in some tangible way, will help my son as well.

If you would like, please help by supporting Jack's walk. Our pledge sheet is at:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=107480&supid=115226399


I think www.kintera.org and then search for "corboboys" will get you there also.

Thanks again and I'll let you know how the clinic visit went.

Tuesday, January 17, 2006 8:21 AM CST

**New pictures**

I know, I know

It's been a long time since I updated everyone on how things are going. I have a few bruises from folks at work for this temporary lapse of reason...

Cooper is really becoming a little boy. He loves his playroom and wants to spend as much time as possible up there. He has learned to stack blocks, explore his toys, destroy books, wreck havoc on all toys, throw balls and crawl through a tunnel. He's 110oy and proud of it. We have a video camera in the room that beams a picture to a monintor downstairs in the kitchen. This allows us to be downstairs and Coop up, but we can keep an eye on him. He does great, playing by himself and often prefers that we're not there (starting already...he's 18 MONTHS old, not 18 YEARS, but try and tell him that). It's cute to see him running around playing and growing.

Coop has him moments though, and it's usually around 2 a.m. when he starts to yell and cry wanting us to come into the room and hold him. There's a part of us that likes this because it's the only time Coop sits still and you can hold him in silence. Otherwise, it's a smack down wrestling tournament all day long...(you should see what we have to do to change the diaper). We're looking for strategies to change this though, because while I may not be the best looking guy on the planet, these 40 pound bags under my eyes are not helping the cause.

Jack is doing super! He has managed to sit up by himself for up to 20 seconds and continues to gain strength all over his body. He is growing, both length and weight wise. He is definitely a string bean though. Jack's mother says he is so cute that he's pretty. Jack's dad doesn't like to hear the word "pretty" and his son's name in close proximity...boy's aren't "pretty", they're handsome. Nevertheless, Robin persists and has a strong argument considering the head of hair and those big blue eyes this little boy has.

Jack's physical therapy is starting up again (we have to change providers because of our move). His former OT came out to visit Jack last week just to see him (Jack is kind of an addiction). She couldn't believe how much progress he's made since the move and continues to be encouraged with all his potential.

The hardest part is being patient...waiting and working to get him caught up to Coops...some nurse told us that one day...

Anyway, things are going fine. Jack has a handful of toofers coming in, his little mouth has all these red bumps on the gums as they are pushing up. At times the pain gets to Jack and he let's us know...he certainly has a voice on him!

Which reminds me of a story...we tried to go out to dinner this weekend...all four of us. Within minutes Jack's toofs and the temperature (hot) in the restaurant got to him and he started to cry. About the same time Coops ran out of things to throw on the floor and started to yell for more. We threw our meals into a to-go box and ran out of there as fast as possible, hoping no one knew us...we've become one of those people we used to talk about...how could you bring your young children to a restaurant??? yeah, yeah, we were such fools back then.

One last thing, and probably the most important...we're going to participate in this year's heartwalk to raise money for research to combat heart disease. Jack will be leading 'Team Corbo' along with his faithful sidekick, Cooper. We'll do a lap or two around the Mall of America on Saturday, February 25 (should be fun getting the twins up early). We'll be part of the University of Minnesota Pediatric Transplant Team. Anyway, don't like to ask for donations, but figure this is a worthy cause and one near and dear to us...if you'd like to sponsor us please follow the link below...

http://heartwalk.kintera.org/twincities/corboboys


Also, please think of Jack on February 25 and consider becoming an organ donor. Remember, you can't take them with you.

Thanks again and keep the faith.

Sunday, January 1, 2006 7:46 PM CST

Happy New Years!

A fairly uneventful holiday for us, except everyone was together in the Corbo family, under one roof! Jackers is getting bigger, stronger and more active. Coops is starting to enter the terrible two's a little early.

Loving life, thanks for the prayers and may everyone out there have a great, healthy and wonderful 2006!

Wednesday, December 28, 2005 5:00 AM CST

A year ago Jack and I had our epiphany together…we reached the equilibrium point of the holy trinity, as father and son we were in balance with each other. That day, a year ago, his little body turned a big corner and he started to heal. The issue back then was renal function, basically he had stopped peeing and was getting very fluid heavy. I ended up spending the whole night with him, holding his hand, singing and playing with him and by the next morning a little crabby baby was playing and peeing a storm. About ten days later he was on his way home for the first time!

Fast forward a year; tonight Jack woke up about 2 a.m. and started to cry for no real good reason. A hard, long cry as if he was in pain. (He sleeps in-between Robin and I, so we had front row seats!) He settled down after a few minutes, but I was awake and up for the day. As I laid in bed trying to fall back to sleep my mind raced through all kinds of issues … how to organize my new garage, work issues, bills to pay, money to earn, got to get Coops to sleep through the night and of course how far Jack has progressed in a year.

He has come a long ways. When we brought him home last year he had several issues; including stomach problems, a shaved head from the shunt surgery (it looked like a spark plug on his head), no head control and was so weak he could barely move his limbs. Also, at this time last year, Coops was going through his physical therapy to learn to roll over and to shape his head more roundly. Again, fast forward to today, Coops is running, not walking, and is the happiest little boy playing in his big new room. Jack has gained over 8 pounds and grown more than 7 inches! He is rolling over, talking (babbling) up a storm, has great eyesight (another surgery this year) and loves to play and watch Elmo in his new house. He is the happiest little boy.

Jack has had no rejection issues and continues to wean from all his drugs. His clinic visits (knock on wood) have all been superb and with clean bills of health. He’s amazing.

I wonder where and what these boys will be doing this time next year?

This isn’t just luck; these results are a product of that trinity I mentioned last year remaining in balance. The day we transferred Jack over to the U of M, the doc’s told us that we (the parents) were the most important part of Jack’s medical team. So true!, except it’s not the ‘medical team’, it’s more like the ‘life team’. Jack and Cooper needed the science the doc’s and nurses could dish out, they needed the intellectual stimulus to develop and the love to have the motivation to flourish. It’s a balance thing, and by the Grace of God our boys have had it.

Sunday, December 25, 2005 11:23 AM CST

**Christmas photos posted**

Merry Christmas!!

Wow, it's been a long road to get here, but we had our first Christmas with everyone home!

Last night we went to Mass at a church in our new neighborhood. I thought the lobby was nice, because me and a few other fathers spent the whole time there trying to keep our little ones occupied. I spent most of the time with Cooper climbing stairs and running around. I traded with Mom and Grandma a couple of times and had to walk Jackers around so he could look at the lights. Towards the end we had both of the boys in the lobby, so of the entourage, four out of five of us were in the lobby. Oh well, much better than the PICU.

Jack had a little too much and started to wail right as the service was ending. We packed everyone up in the minivan, and headed home with Jack crying at the top of his lungs the whole way. Within two minutes of getting him in his house and the Elmo video on, Jack was laughing and bouncing up and down in his chair. He was the happiest kid in the world. I guess we know where he wanted to be.

Last night I put Jack to bed and felt his heart beating. I guess it was a moment when reality hit me; for that was another child's heart beating in my Roni. I was so happy because the next day I was going to celebrate this most holy day with my two boys. Juxtaposed to that was the thought that somewhere a family would be without their child. I realized that despite what was under the tree or what Santa did or didn't bring, that moment was the true meaning of a gift. Selfless and with love and pain, that family made my family.

I also want to thank the nurses and doctors that became more than caregivers to my family. Without them this day would not have been possible, you give a gift of knowledge and caring everyday you step foot in that Hospital and touch a child.

Cooper was so excited when he came down the stairs this morning. He saw his presents and all the things to play with. He didn't really like unwrapping the presents, but he liked playing with them. He got so excited he started to have a little sensory overload and was happy to get a little quiet, alone time and take a long nap.

A very special day, a normal Christmas; one of many to come by the Grace of God. To everyone out there, Merry Christmas!

Thursday, December 22, 2005 9:04 PM CST

Three days until Christmas, and Cooper and Jack are running all through the house...

This is a very special time of the year for many reasons, we are especially thankful for our two "presents" who will both be under the tree this year! Fabulous!

We have gotten them both all kinds of presents and I'm sure they'll be further spoiled. Oh well, what the heck do we work for anyway?

Cooper is dreaming of running and being chased by his Mommy or Daddy, giggling all the way. He is also probably hoping Santa brings him something to open and close, because he loves to open cabinet doors. (Apparently he has chosen to refuse to learn what the word "no" means.)

Jack, on the other hand, literally has that age old wish on his mind...all he wants for Christmas is his two front toofers. The little guy has had the rosy cheeks and been a little crabby the last few days, if you're lucky enough to have him allow a look into his mouth, you see these two teeth just ready to break through.

So you know what he'll be dreaming of Christmas Eve night.

We'll be snug in our bed knowing that our present was delivered twice to us, once on June 26, 2004 and then again on October 17, 2004.

Friday, December 16, 2005 4:46 PM CST

*New pictures*

A week out from the big Christmas weekend smack, and all through our house are signs of Jack!

The first Christmas with Jackers at home...both of our boys around the Christmas tree opening their presents and joining in the celebration. What a great year this will be.

We talked to the folks at the U about Jack's great biopsy results last month and everyone is excited. They don't want to change any drug emounts now, but will probably do so a few weeks before his January appointment and then check to make sure everything is okay with an Echo. This is fine with us, we want to get Jack on as few as drugs as possible, but everything is going so good right now we are really cautious in making any changes. So, slow is the name of the game now.

Jack has crossed, finally, the 20 pound mark and held it for the past week. This weekend we'll have a special ceremony and turn his car seat around so he can face forward, just like his brother. Now Coop and Jack can both look up at their DVD player while they're in the miniVan. Jack use to have to look in his mirror at the reflection of the screen. He's getting to be such a big boy.

We moved to our new home about two months ago. At that time Coop was just a novice at walking. He has recently graduated to running. It's a little funny because when he runs its kinda sideways, instead of straight forward. However, he has some special technique that makes his steps silent. I'll be carrying Jackers down the hallway and all of a sudden this red headed streak will pass me by as he runs past me. Coops loves his play room and is learning to toss balls, stack blocks and play musical toys by pushing buttons. He also loves to play football and wrestling with dad. It's a lot of fun, and I'm tired at after a three fall match with Coops. I sleep so hard that I have some of the most wild dreams ever.

Anyway, things are going great here. We march along, everyday getting a little bigger, stronger and recovering. A far, far cry from the depression that I was in last year at this time.

We know this is a tough time of the year for some, especially some saint of a family that made the Gift of Life to Jackers. A special prayer of thanks goes out to you.

Tuesday, December 6, 2005 4:37 PM CST

Another week has passed by and I'm just getting to updating the journal again. Things continue to progress with both boys. Jack is getting stronger every day and really starting to put some meat on his legs. I think he'll surprise himself one day and be able to stand on his own. He's a ways from that now, but he's moving in that direction.

Jack also crossed, at last, the 20 pound mark. He has held his weight at this level for six days in a row now, one more and we'll have the ceremony to flip his car seat around. I took him on an errand last night and he got to sit in Coop's seat facing forward. He loved it so much he didn't fall asleep until we were out of the neighborhood. He's usually out by the time we're out of the driveway when he's in a car.

Coop's is doing just fine. He's learning to stack blocks and scribble and continues to explore. Coop has this insatiable desire to touch everything, so it's impossible to get him to hold still. His head and eyes are constantly on the look-out for something new. Also, with his big meat hooks for hands, once he get's his mits on something you can't get it out. He has a special fondness for remote controls. He'll grab it from you and point it at the TV as if he wants to be in control of the clicker!

Things are progressing fine. Jack's super biopsy results last month have not yet yielded any drug changes; but we think they'll go down during his Echo in January. We're not overly concerned about this, frankly Jack's doing so well right now we're not in a rush to change anything.

Saturday, November 26, 2005 8:12 PM CST

**Thanksgiving photos**

This was a very special Thanksgiving for so many reasons. Our family is together and strong, and Jack's health is almost beyond explanation and expectations. What a difference a year can make!

Last year at this time, I remember depression setting in as we realized Jack wasn't going to be home with us. Cooper was starting to break out of the infant stage and really interact with people, and we were stuck at the Hospital. It was if we couldn't enjoy either of our two miracles. Those emotions were tough, of course with a little reflection, we realized that it was all part of God's will and in truth, we were so blessed. This weekend reminded me of those emotions, and how truly blessed we are.

We are blessed to live in this great nation, where the life of a very sick, little baby can command the attention and resources of so many talented people. Our country not only accepts this base value, but advocates for its continued expansion and strength. I don't think most of the world could claim this value. I remember reading that in the Netherlands Doc's can decide that a certain patient is too sick and would require too many resources, and can legally work to terminate that patient's life. I'm not sure of the veracity of this article, but I don't find it that hard to believe...and that's 'civilized' Europe. Just think of the far reaches of Asia, Africa and so forth. I remember reading that and thinking that there would have been a conversation and a vote or something about IF they should treat Jack...not HOW!

We are blessed.

On December 29th, I will have worn that uniform of this country (Army Reserves) for twenty years. I must admit my initial motivation to join was to help pay for college. Since then, I have found the collegiality, patriotism and sense of belonging to something greater than me has long eclipsed those early reasons. If I didn't know why during those twenty years, I now know why I was willing to fight for those rights.

This country has spawned many great people, often you read about them and depending on your political persuasion you like them or not. However, the true hero's of this country are those that serve their brothers, silently and without regard or expectation for thanks. Until a few years ago my mind would have instantly raced to the images of the Unknown Soldiers buried in Arlington. Today, I can only think of an unknown family that made such a huge gift to my family. I don't know who it is, I don't know where they reside, I don't even know what gender this sweet donor child was. I do know that there cannot be a greater gift than that which they gave to my son. They are my hero's; wherever they are and whatever they are doing now, may God bless you!

Thursday, November 24, 2005 9:30 AM CST

**New photos**

HAPPY THANKSGIVING!!

ZERO REJECTION!! -- ONE YEAR, POST TRANSPLANT, BIOPSY RESULTS -- ZERO REJECTION!!!

THE FUTURE'S SO BRIGHT, JACK HAS TO WEAR SHADES!!

A LOT TO BE THANKFUL FOR TODAY!! JACK'S FIRST THANKSGIVING AT HOME!!

Sunday, November 20, 2005 10:39 PM CST

**New Photos**

Sorry, it's been several weeks since I last posted. The pace we're operating at trying to get settled into the new digs has me pre-occupied. Also, I report with a big ol'grin, the boys' health is doing just fine, so I have the luxury of being busy doing something besides healthcare related things. (Almost that is, Jack had to go to the ER last weekend to get a mic-key replaced when his old one fell out. I was at the ER and seeing a Doc within 45 minutes of it falling out, however in that time his stomach muscles tightened so much that they had to use fluoroscopy and alot of pressure to get a new mic-key in. Jack cried for a while, but afterwards he was fine.)

Wow, can't believe I can say that. Last year at this time we were hoping to get Jacker's home before Thanksgiving. We knew that was a long shot, but we wanted to try to get the ball rolling so we had him home for his first Christmas at least. That was not to be unfortunately, but we'll make up for it this year.

Jack is doing just fine. He is scheduled for his biopsy, which he had to postpone a month ago because of his cold, on Tuesday. This is the one-year post transplant biopsy and we're all praying for good news with no rejection. We think things will be fine, but you always have those feelings, keep waiting for that shoe to drop so to speak.

Jack's development is moving along also. His fine motor skills are almost caught up to his chronological age. He's able to pick stuff up, play with it, etc. However, his gross motor skills (e.g. sitting up, crawling, etc..) are still lagging behind. We're working with him...the poor kid though has to work at what should be fun and easy to everyone...things like laying on your tummy and rolling over are hard for him. He's improving though, he just started out so roughly in life that it'll take some time and patience.

Jack's verbal and cognitive skills are just progressing, and in many ways he's caught up to Coops. Jack's only problem here is that he's having a hard time knowing what his name is. We call him Jack, Jackers, Jackaroni and lately just Roni. We think he'll go to kindergarden and they'll take attendence and say "Jack Corbo, is there a Jack Corbo here?" Jack will raise his hand and say "here teach, but everyone calls me Roni." (Note, Jack got this nickname because he just loves to eat Macroni-n-Cheese. Jackaroni was just a natural off shoot.)

Cooper is cruising along. He is up and on his feet and running all over the place. When we first moved into the house last month he could walk a step or two and that was it. However lately, he's running over all the place. He loves to open and shut doors, get into cabinets and take everything out, knaw and chew on everything and generally has a mischievous demeanor. However, one look from those crystal blue eyes and red hair and you're wrapped around his finger.

Also, let me tell you something about Coops; I remember back last summer, soon after Jack was transferred to the U, mentioning that Coop was going to be a linebacker someday. All 2 pounds 14 ounces of him (at birth). Robin has already said no-way to football, but regardless that kid is fearless, strong and smart, classic linebacker! He has these oversized paws for his body and they are strong enough to where he can grab something from your hands and take it away. You have to actually exert some pressure to get it back. His 27 pounds now are nothing but muscle and he's constantly on the go, looking for something to touch and get into. Curious Cooper. Smart? Yes! I watched him take the "child-proof" safety device off a cabinet, get inside the cabinet and empty it out, then put the safety device back on! (I probably shouldn't have just "watched", but Grandma said he could do this so I just had to see it for myself.) All this leads me to the conclusion that we'll have our hands full.

We'll that's about it for now. Our two little boys are doing just fine now. I'll write some more after the biopsy. Until then, God's speed.

Sunday, October 30, 2005 7:41 PM CST

**New pictures posted**

Okay, it’s been a couple of days…sorry, I started writing something last night and hit a key by mistake and lost it all…I was so frustrated that I said, “fine, I’ll start over tomorrow”. So here I am…

Jack had a great clinic visit on Thursday. The vampires were warming up for Halloween as they must have sucked half of his blood out for all the tests they ran. However, in the end it was worth it as everything came back optimal or normal! His heart function and pressures are where they should be. There are minor imperfections here and there, but nothing to be alarmed about now because we all probably have some imperfections in our physical body.

Jack’s kidneys are operating just fine, it’s something that we’ll all keep an eye on now and into the future. The worry is that the drugs he is on will damage his kidneys over time. That’s where we the prayers that the pharmaceuticals find better drugs in the future comes in. For now though, Jacker’s kidneys are doing just fine and seem to be handling all the chemicals he has had in the past.

With this great news we expected to drop some of the drug dosages down, if not get rid of some of them. We were ready to do this, but the Doc’s wanted to wait and make sure his biopsy was negative for rejection first. Sounds reasonable…however, after getting him already for the biopsy they informed us that he couldn’t have it because he still had a touch of a cold. They were worried that any phlegm may cause him to have respiratory problems while sedated. This would cause him to be intabated again. So instead of putting him through that, they just wanted to hold off for a while and reschedule. This in itself is a testament to the strength Jack has gained, as this procedure is no longer on such a critical level as before!

So all in all a good week!

Now lets not forget Jack’s energetic brother Cooper! Coops has been clearing a trail on his own. Coop has been experimenting with taking steps for a while now, but recently he has started walking across rooms! He also has found out how to open “child proofed” cabinet doors and other mischievous things. Coops is very bright and is already causing his parents to gray!

Both boys dressed up in their costumes today and did our new neighborhood’s Halloween parade! It was fun, I pulled a red Radio Flyer wagon with a little Monkey and Lion in it. (Guess who was who?!?) I’m sure Robin will post some pictures! Before we came around the first bend the Lion was too tired and fell asleep though.

Well that’s about it for now.

Monday, October 24, 2005 1:57 PM CDT

Just a quick message, this Thursday and Friday are big days for Jackers. Thursday is his regular "clinic" visit, the first one in more than three months and at his one-year post transplant time. Friday is his biopsy. With the way Jack is feeling and acting we expect good news on both days. If our expectations come true, Jack will have crossed a major milestone. There will probably be changes in his drug therapy as well as more of an emphasis on physical recovery and strength building.

Jack has shown us incredible fortitude and strength over the past year. There are times when I feel let down or sorry for myself and only need to think of my boy for inspiration. He is our hero (when I say Jack, I mean Cooper too and all the important roles he has played in his parents' well being!!).

Please pray for Jackers this week, it's a big one...

Saturday, October 22, 2005 8:25 PM CDT

At thirty minutes past midnight tonight it will be the one year anniversary of the lowest point of my life. It's when Jack had his little "episode" last year, a week after his transplant. It was not a heart attack, it was probably just a bout of uncontrolled blood pressure; however, to me it was beyound comprehension.

Today Jack is the happiest little boy you can imagine. The scars from the surgery are almost completely erased and he has no memory of any of these events.

Maybe the healing hasn't really started for us yet, as just re-reading my entry from last year has me shaken.

Wednesday, October 19, 2005 2:11 PM CDT

**New pictures posted including Jack's One year post-transplant anniversary picture**

I must apologize for being a couple of days late, but Monday was Jack's one-year anniversary of his heart transplant. Later this month he has his biopsy to determine if there was any rejection. If there is none, which we feel there will not be, then we will really start to celebrate as this is a huge event.

We marked the special day for Jack by setting up his new room in his new house. Jack and Cooper are a little out of sorts with the move and all, but are starting to adjust as we slowly start to settle into the new house.

Jack seems to really love his digs...on Friday, while moving in, I directed traffic and watched the boys as Robin and Grandma finished up at the Victoria house. Jack was on the floor rolling around like a pro. In the past he has rolled over, but not like this. Here he was rolling over and over and over again and just laughing it up. He's doing just great!

Cooper wants to run around and explore the new place, but with all the boxes and stuff around we have to keep him on a short leash. Hopefully in the next day or so we'll be able to get his play room (aka the bonus room above the garage) set up and he can go at it all he wants!

We miss our neighbors in Victoria, but wanted to let them know that there are some vacant lots here that we'd love to see them in. Looking forward to meeting our new neighbors.

That's about it for now, I'll keep you informed on Jack's upcoming check ups!

Wednesday, October 12, 2005 1:58 PM CDT

Five Days until the First Anniversity, our second celebration of the birth of our Jackers! Everything looks good, he's growing, heart's doing fine, developing and things look good. We have a couple of more Dr appointments this month, to include a heart biopsy in a few weeks, but we are confident that things will be fine.

When Jack makes it to the one year mark with no rejection, we'll some would say that he's emerging from the woods of danger then. I'm included in that camp. We'll always be on the watch for things, and he is certainly a special child; but God has shown us this path and I think it's a long, prosperous one for Jack (and Cooper!).

The next few days are full of chaos as we are making the final preparations for our move. Soon we'll be moving back to the Eastern side of the twin cities, leaving good friends, fond memories and irreplacable neighbors. We'll miss you all, but remember it's only a few miles that seperate us and hopefully we'll meet up again in the future.

Thanks for thinking of us and keeping Jackaroni and Coops in your prayers.

Tuesday, October 4, 2005 8:47 PM CDT

Another doctor appointment, another lopsided victory for Jackers!

He had his three month post-op check up with the eye doc today and the comments were: "dramatic improvement", "probably will NOT need glasses", and "we don't need to see him for another 5 - 6 months". Magical words!

Over the next two - three weeks we have two more big appointments. One with the neuro surg as a follow up to his head shunt and the big one with the cardiologist to make sure his heart has no rejection and is working the way it should.

Two appointment down, two to go; we expect good thing and pray the Lord continues to bless Jackers.

Jack and Coop made a victory lap up in the PICU today just to show off. Fortunately (for the kids) the PICU was not very busy and unfortunately (for us) most of the docs and nurses that took care of Jack were not there. However, we did see a few and had a good reunion. Most people have to do a double take of Jack because they haven't seen him in so long and he has a full set of hair now (and then some). Jack's best part was leaving and getting back in the van to watch his video.

Great news!

Saturday, October 1, 2005 7:21 AM CDT

**New pictures**

Yesterday was the first appointment of several over the next month which will mark the one year anniversary of Jack's transplant. He saw a neurologist to be evaluated as to his physical and mental development. The overall impression of this doctor was that Jack is amazing and just doing well. He has some developmental delays largely due to lack of physical strength and laying in a hospital bed for 7 months so he will continue to need some PT/OT, but there are no signs of any permanent deficits. He'll have to go through some more tests and evaluations, but altogether an outstanding report. Fantastic!

He has follow up visits with the neuro surg (shunt), opthomologist (eye), and of course the cardiologist (heart) later this month. The biggest hurdle of course is the one year checkup on his heart. We have full expectations that he'll be fine, based on our observation of him and just knowing the moxy this kid possesses. If his heart check is good later this month, then he might get to go down on some more drugs and he won't have to go back to the doctor but once every SIX months (unless of course he needs to). Great news!

Anyway, thought I'd fill everyone in. Things look good here.

Thursday, September 22, 2005 7:17 AM CDT

**New pictures**

It looks like Coop and Jack have weathered the second cold of their lives. Cooper came down with a cold late last week and the whole world stopped. He was miserable, and being the social guy he is, he wanted to share that misery with everyone. The problem was at night he couldn't get comfortable because he was so stuffed up. We also think he was a little scared and uncertain of what was going on. So, I crawled into the guest bedroom and took Coop to sleep with me in there . . . in the big bed!

After being worked over a few nights like this, I felt like Rocky at the end of the first movie. Coop flips around like a politician on the eve of an election; I think the problem was he thought the big bed was just a big crib and what do you do if you are Coop in a crib? Well you move and flip over until one of the sides catches you, and then you fall asleep there. The big bed just presented more opportunity to move. He ended up sleeping perpendicular to me and parallel to the headboard. His whole body was touching the headboard as it has slats like the crib and he felt more comfortable up there. The process of getting up there though left me with sneeze spray several times, a foot in my mouth, his big head hitting my head twice and a knee to the groin. At least he slept well.

Coop finally succeeded in transferring his cold to Robin and Jack, with both feeling under the weather later in the weekend. Cooper finally returned to his crib on Sunday as we were walking zombies by then. He was starting to feel better but would wake up every so often at night to cough. I think the coughing frustrated him so much that sometimes while sleeping he would yell out in anger after coughing, as if he was saying “okay, that’s enough!”

Jack started to come down with the cold Sunday night and had a full fledged runny nose by Monday morning. This of course scares the crap out of us because we’re worried about RSV (either boy) or other damages it could do to Jack because of his suppressed immune system. Jack started to really get sick Monday afternoon. I came home and checked Jack’s temperature around 4:30, it was 99.5 … still in the safe zone. I took the boys for a ride, to get them to fall asleep (I did this by the way on Sunday with Cooper at 4 a.m. and then again later that day (night) at 11:30 p.m.) and when I got home around 6:00 he had spiked to 102.3. Robin and my blood pressure went up, we remembered the docs telling us if Jack spikes a temp greater than 101.5 to get him into the ER immediately to be evaluated (I think this could be an early sign of rejection). I called the transplant coordinator and a few minutes later were breaking more traffic laws as I made my way to the U. Jack was checked out and given some Tylenol which brought his fever down. It was determined it wasn’t RSV and just a bad cold, we were to get him on a four hour Tylenol regime for a while to control the temperature. The next morning I brought him to the Pediatrician just as a follow up and they said the same, plus they gave him some OTC cough medicine.

We gave the cough medicine to both Coop and Jack and it was a God-send. Coop started feeling better right away and the bonus…it knocked both of them out for a couple of hours. Mom and Dad were able to get a shovel out and clean the house up a little and at night … we actually have been sleeping the past few nights. Jack of course thought the cough medicine tasted like poison and hated it, Cooper thought it was great and wanted more. By the way, Cooper actually refused to eat food while he was sick for the most part … the first time in his life he’s turned food down. A certain sign things were not as they ought to be.

Anyway, a long story to show that the boys had a cold and are just normal. Jack fought it off and is doing much better now. Things are looking good.

Saturday, September 17, 2005 12:18 AM CDT

**New photos**

11 Months ago today was Jack's transplant...we're one month away from the first anniversary of Jack's second birthday...everything seems to be going just fine!

"Here's the deal" (for you Desperate Housewives fans, that's said on every episode) ... we're gearing up to move, doing some work ourselves on the new home, busy with two kids and the numerous other things typical of a family with twin baby boys. We've wanted this for years, but the reality of the situation is that it's a little hectic, and at times, stressful around here. Of course, NOTHING like it was last year at this time.

Well, on Wednesday of this week Jack wanted everyone to know that he was still supposed to be the center of attention. He decided to pull one of those "gotcha" moments ... he started to wretch and cry for hours on end. We thought teeth ... but it continued even after giving him tylenol and oraljel. So, we thought it could be another shunt malfunction, as the symptoms were very similiar to last time this happened in May.

I rushed Jack into the pediatrician to have him checked out. They ruled out most everything, but when they pushed down on his shunt he wretched. Okay, rush to the ER at the U of M to see the neurosurg doc. I get there, Jack's in misery, Robin's busy at home trying to find a place for Coop so she can get to the U and things are starting to look like another "bump in the road". After the ER doc (who we knew from previous trips to the ER-- a fellow parent of twins by the way) looks at Jack, he wants to admit him for observation and get neurosurg down right away to maybe prep for a shunt revision surgery. In the meantime, as we're waiting for the CAT scan to open up, Jack is slipped a mickey and falls fast asleep. I use the opportunity to give him some food, as he has not had any during the entire day because of his crying and tummy stuff. Neurosurg check him out and rules out any type of malfunction. Great, now what? Robin arrives and Jack wakes up at almost the same time. We'll apparently that's all Jack needed was him Mommy, a little food in the tummy and a little shut eye. He woke up from the mickey and was the happiest baby you can imagine. He was kicking, playing with everything he could touch and laughing and quite the chatty Cathy.

A fellow from the Cardio team showed up to look at Jack, as he was paged earlier (again, we know this guy from Jack's long stay in the hospital and he was on the surgery team at the time of the transplant). He looked at Jack and said this is the best I've ever seen him and sent us home with the diagnosis of a 24 hour stomach bug. The whole way home Jack laughed and giggled and thought the whole episode was such fun.

Robin and I finally got home, frazzled and recovered Coop from a gracious neighbor. Coop apparently didn't even know we had left as he had a great time playing with other neighborhood kids and checking things out...much to our chagrin.

I don't know what the deal was, it appears the little bug finally disappeared. Maybe Jack just wanted to have some fun with his parent's emotions ...I don't know. In any case, he's back home playing with his brother, the way things ought to be. And Mom and Dad are exhausted. Apparently the way Cooper and Jack think things ought to be...

Thanks, one month to the anniversary of Jack's second birthday!

Tuesday, September 13, 2005 3:54 PM CDT

Avery's story has brought yet another perspective to our journey here. By the Grace of God, our Jack is recovering and getting stronger everyday. We continue to pray for Avery's family; for comfort and strength during this time. We agree that sometimes getting away or jumping into a large project can help...

Speaking of which, if anyone has some time to help us move... just kidding...

We're a month away from the move and things are starting to get real and real hectic around here.

Robin has taken some time to though to take the kids for some walks as the pictures will attest to. As you can see by these pictures Cooper has an attitude and Jackers is so damn cute he's "man pretty".

Anyway, the pictures say more than I could possibly write, so I'd like to direct your attention there...

Friday, September 9, 2005 11:34 PM CDT

**New pictures posted**

A few days ago we were alerted to another little girl that had a heart transplant. She needed prayers! Her underlying health condition was different than Jack's, however, her parent's situation was very similiar to our own. Upon reading their caring bridge site and some of the history, our souls went out to this family. Visions of Hospital rooms, lights, smells, people, monitors, tubes, drugs, tests, and the endless agonizing wait started to refill our thoughts. This little girl had had the transplant and things were not looking good.

We followed her story for the last few days and prayed. Robin and I both shed tears these past few days over this little girl from where we don't know, but mostly because it's a baby and she's in trouble, but also partly because this was our Jackers a few months ago. The emotions that we have managed to suppress so far were starting to bubble to the surface again.

The little girl, Avery, lost her battle late this morning and joined our Heavenly Father. Her parent's entry in caring bridge, short but full of strength, is an inspiration. It is the journal entry that I had nightmares about for months. I prayed that I would never have to make it. I didn't know how or what I would say. I worried that worrying about such a trife thing was wrong, when I should have been worrying about my children and wife. This endless cycle pushed me to the edge of sanity several times. The emotional toll of the situation was too much.

Now I see the love of a father and a mother in such a time. I am inspired and full of admiration for this family. May God bless them and comfort them during this time.

Today I met Robin and the boys at the new home to see the progress so far. That's when Robin told me the news about Avery. I practically ripped the door off the van to hug those boys. Cooper is full of energy and has this nasty little laugh. Jack has these incredible dimples when he smiles. What was life before these two?

I thank the Lord that these two are here in my life. Every minute with them is a blessing, even those at 3 a.m. with a wail above the noise level of a jumbo jet coming from Cooper's mouth. I'll probably continue to complain about those things and the chaos in our life because of the kids. However, not too deep beneath that veneer are proud parents loving every minute of it.

Little Avery's story re-kindled a passion in me... it also scared me because of the similarities with Jack. We were that family a few months ago, but by the grace of God our story has many happy chapters being written now.

Avery's family, we don't know you, not even sure where you live or where you're from, but we love you. May you find comfort, support and grace during this time and may God hold you in the palm of his hand.

Friday, September 9, 2005 7:21 AM CDT

Please everyone pray for another little heart baby. She needs all the prayers possible. Go to: http://www3.caringbridge.org/ny/averysheart/index.htm

Tuesday, August 30, 2005 8:51 PM CDT

**Jack's first haircut photos posted. Cooper's will be posted when he grows more hair and actually needs a cut.**

Less than 50 days now until the first anniversary of Jack's second birthday.

The pictures Robin posts really tell the story of the boys better than I ever could.

Cooper is days away from walking and we have both witnessed him taking steps away from furniture, unassisted and totally on his own. Very fun for us to watch, but terrifying once we think about the energy we'll need to keep up with him in a few weeks.

Jacker's is making his own leaps. He is closing in on the nineteen pound mark, which means he is ounces away from flipping his car seat around and facing forward. We promised him that once he breaches the twenty pound mark, he can face forward just like his brother. This is a big deal, as then Jack can watch the DVD player when we're driving in the mini Van and won't have to watch Baby Einstein in the mirror by his seat. He's very excited!

Tonight we took Jack to get his first haircut. As some of the pictures will attest to, he has been blessed with very thick hair and a lot of it! It was starting to become a little unmanagable, however Mommy didn't want Jack's curls to get cut away. Finally, we decided to do it and get the first cut. We went to a kid's hair place and took lots of pictures. Robin kept all the clippings and will probably place them under her pillow and keep them there until high school graduation (she loves them, if that wasn't obvious!) Jack did a good job, only starting to cry at the end as he got tired...literally, as he fell asleep in my arms as the stylist was clipping his "side burns". (I held Jack that entire time.)

Cooper watched and was glad that his old mohawk has only recently started to fill in. He's getting close to needing a clipping though...so stay tuned.

Things are looking good, Jack's health is just purring along and Cooper is busy cutting two more teeth (he'll have six total now).

TTFN

Wednesday, August 24, 2005 8:13 AM CDT

**New pictures posted on Aug. 30**

Holy Macaroni Jack, it's been a week since our last update!

It's amazing how time is flying by now a days. Last year at this time every hour was slow, I remember sitting in various waiting rooms, patient rooms, hallways, cafeteria's, etc... and watching that little red hand go around the clock...waiting, waiting, waiting...an extremely hard thing for a person like me.

Anyway, back to the good stuff -- the boys. Cooper is days away from walking. He is standing on his own, that is until he realizes that he's standing on his own. Then he instantly plops down on his diapered butt and takes off crawling. He's a fast little bugger now a days and is just so damn curious. He gets into everything and we're learing to "Cooper-proof" the house. As the pictures show from this weekend, Cooper loves to flirt, especially with the ladies. His infectious smile, proudly showing off his four teeth, and his devilish laugh make him irresistible.

Jack is following up close on his brother's heels. He has turned into a "chatty Kathy" lately. A few months ago we were wondering if he'd ever make a noise besides crying. Now a days we'll be eating supper and we'll have to yell at each other to be heard over Jack's chirps, laughs and giggles. It's sweet music. He also has starting the kicking, just like Cooper a few months ago. We put him in his swing, which he loves, and have to weight the legs down with iron dumbbells to keep it from tipping over he kicks so hard. Of course he thinks it's the funniest thing in the world, so he's just laughing. Jack is rolling over, when he wants to, and is starting to really strengthen his upper body. He's just making great progress, of course all the PT/OT is helping greatly in these efforts.

Jack continues to sleep with us in our bed. Well, it's become Jack's bed as you can imagine. For some reason he thinks his 30 inches should be perpendicular in the bed instead of parallel. Also, I think he must have a lot of static electricity in his body, because he's always stuck on me during the night. I'm forced to sleep like a 2 x 4 all night long as to not hurt the little guy. Jack thinks this is all funny and lately has developed the habit of laughing out loud around 3 in the morning. He's still sleeping while he's doing this, so it must be some dream?!? I get up around 5 a.m. and then Jack wiggles over to be stuck to Mommy. This is fun also, because an hour or so later Jack decides it's time to get up and starts to kick (cycle) and hit Robin on her side. She wakes up and Jack smiles at her, with his one toof (as we call it) showing. It's impossible to be mad.

We're busy preparing for our new house, starting to get excited. The next few months will be busy with this and then, hard to believe, the one year anniversary of the transplant, Jack's second birthday, is coming up soon.

Wow.

Wednesday, August 17, 2005 9:24 PM CDT

See New Pictures Posted 8-21-05

Things continue to progress well here, Jack is really getting active and started to really pick up steam in his development skills. In a lot of aspects he is becoming a "chatty kathy" so to speak, he just yaks, yaks, yaks all day long. I believe that he actually can say more sounds than Coops.

In other areas Jack is getting stronger and stronger; learning to kick everything around and loves to flap his arms like he's flying. He can flip over and is just starting to enjoy time on his tummy. Cooper was like this earlier this spring, so Jack is just coming along down the same path.

Jack is a happy little kid, he sometimes has problems "urpping" with his medicines, but even that has slowed down a bit. He's on 9 different med's, we're still trying to wean those down some, but when you only go to the Clinic once every three months, there isn't a lot of opportunity to discuss this with the cardiologists. Jack can, but does not like to eat solid foods yet. We're not really pushing this too hard yet as we'd rather see him gain weight to build up as much strength as possible before the coming RSV season.

Speaking of the upcoming cold and flu season, Jack has been incredibly healthy. He has had only one cold since he's come home in January, otherwise perfect health. The credit for this belongs to his mother, who keeps his environment clean and healthy. This is truly a blessing and only makes him stronger.

Cooper is also doing fine. He is standing on his own now, but as soon as he realizes it he sits down. He also likes to open cabinets and throw everything out on the floor. He is just plain full of energy, constantly on the go. He is also the cutest little thing you'd ever see. I know you've seen pictures, but they don't do him justice compared to seeing him in person. He has grown four teeth so far (Jack has one) and has managed to bite both of us once. This was our first lesson in scolding our child, it was painful for us as well as Cooper, but we can't have a biter in this house. Other than that, Coops is a great kid. He plays and loves to page through his books. I'm a little biased, but I think he's exceptionally bright and plan on sending two kids to Cambridge on a Rhodes scholarship someday...

Hey, why not, I can always dream and who knows?

Sunday, August 7, 2005 12:04 AM CDT

**Check out new pictures
as of 8-16-05**

A year ago yesterday Jack was listed on The List. Today we went for a long walk, the whole family, all four of us. God is good.

Jack continues to make strides in his developmental gap and is really doing good. He is gaining weight, slowly, but is getting closer and closer to that magically 20 pound mark when we can turn his car seat around. Then he can sit in his "throne", just like Coops and watch a video.

Cooper's newest nickname is Curious Cooper, as that kid is the most energetic, nosy little guy I've ever met. He is constantly on the go and does not like to sleep, because he might miss something.

Both boys are cutting teeth now, Jack has one on the bottom front and if he let's you see it, it's the cutest thing in the world. Coops has two up and down, four total and there must be more on the way. All of this makes for long nights, as they seem to have figured out how to alternate nights with these teeth. It keeps their parents up and lowers their defenses for the next day.

Pretty normal stuff, and we're liking it.

TTFN

Tuesday, August 2, 2005 8:48 PM CDT

**New pictures**

I'm not sure how or if I wanted to write something about today. Today was the day one year ago that Jack was transferred to the U of M. He was in a coma, unable to move at all and had just been baptized. He weighed about five pounds and had numerous, well over a dozen, hoses and tubes stuck into his body. The ambulance drivers came and took him to the U. We had to drive behind in a car. When we got to the U, we went to the ER but they didn't know where Jack was. It took us about an hour to find our little boy, only adding to the stress and disorientation we were in. There is no doubt that this was the low point of our lives. Jack was not stable and was very sick. We did not appreciate and were not made totally aware, as if we could have even comprehended at the time, of how sick he was. It was hour by hour.

Today I came home and Robin was playing with Jack-a-roni. He was on his back almost ready to roll over. He weighs about 18 and half pounds and is doing just great. Jack loves being home, is so alert and active, and loves his brother. Cooper is teaching him all kinds of things and we're confident that the developmental gap will be closed in short order.

What a difference a year makes. We thank God every day.

Saturday will mark the one year anniversary of being listed on "The List". The next 72 days mark the longest and most agonizing time of our lives. Then, on Oct 17th we'll celebrate Jack's second birthday.

Somewhere there is a family who will also mark that date. I don't know how to comfort them or what to say besides 'thank you' and may God bless you.

TTFN

Sunday, July 31, 2005 8:07 AM CDT

31 August 2005

From Dad

It's been two weeks since my last posting, I've been away doing my military annual training in Washington DC. It was very hard being apart from those two little guys, but they initiated me when I got back with dirty diapers and all the other fun things associated with two little boys. They grew so much in those two weeks.

Coops is over 23 pounds now and just full of energy. You have to sit on him to get him to stay still. He has four teeth now, two up and two down in the front. He is 100% boy and is so curious about everything, especially cabinets and drawers and how to get inside of them. He has also developed this habit of leading with his head. If he wants to get down from somewhere, he puts his head down and plows away. If he wants to open something up and his hands are full with something, like a bottle, well the head works just fine. He has all these little bumps and bruises all over because of it. He so damn cute though.

Jackers is over 18 pounds and climbing. He finally broke through the plateau of mid 16's and is starting to gain some weight again. He has grown in length and is really active. We think he has developed a few bad habits and is slightly lazy, as he doesn't really want to flip over on his tummy yet. Other than that, he is doing great. His eye surgery a few weeks ago has opened the world up to him. He can see and is just so excited about it now. He's doing great.

We are doing better as well, through a lot of work and patience (e.g. living in a museum with two little boys) Robin has sold our house. We got our closing date as well and are so thankful for that. Now we can turn our attention and excitement towards the new house that we'll move into sometime in October. The boy's playroom is almost ready, it's a bonus room above the garage and it's huge, open and hard to hurt yourself in.

Thanks all, TTFN

Wednesday, July 20, 2005 8:18 AM CDT

BIRTHDAY PICTURES ADDED (FINALLY)!

Hello and greetings, my boys are nearing their 13 month mark if you can believe that! I'm having a hard time believing it!

Jack had his eye surgery last Friday and the first 36 hours were pretty rough. Fortunately he only had to spend time in his parent's bed and not the Hospital, so that made recovery a lot faster and better. I don't think it was the surgery that bothered him much, except he kept wanting to rub his eyes, but coming off the anesthia (sp?) was bothering him.

The Doc told us to put these drops in his eyes twice a day for a week. Okay, I know we have to do that ... he had the benefit of having Jack sedated and tied down to put them in ... but boy did we find out how strong our little man has become. I would have to hold Jack down and pry his eyes open as Robin would try to drop this goop into them. Knowing and seeing what Jack has been through this first year, and then seeing him fight so hard at this, it about broke my heart. However, once the goop got in his eye and he blinked, he stopped crying and started to laugh. It must have felt good to those dry eyes.

Jack went back for a post-op visit yesterday and things look good. The doc checked him out and there in no infection, always our major concern during a procedure because of his repressed immune system. The eyes and his sight? - they seem to be doing fine. His left eye isn't roaming around anymore when he looks around and both seem to track items much better. Sunday, when I was carrying him downstairs, he looked up at me and just started to smile and giggle. He was trying to get my attention, instead he got all of me. That instant was one of those that will be replayed for me at the moment of my death, it was spiritual, knowing that my son knew me and wanted me to smile back to him.

Jack'e eyes are pretty blood shot but seem to be doing better everyday.

I'm on Active Duty right now on my annual two week training stint in the Army. This is my first time away from the boys. I was so looking forward to having some "alone" time; time just to relax, sleep, watch TV, read a book and eat a whole meal without being interupted. Okay, that lasted the first day. I miss those two incredibly right now.

Robin and Grandma are holding the fort down, trying to live in a virtual museum as we keep the place clean and cool for potential buyers. It's pretty tough work when you got two boys, especially one named Cooper who wants to get into everything. Coop has mastered the crawl and has proven again that he is afraid of nothing. He thinks he's big stuff pulling himself up and standing by furniture. Also, he is an especially big boy now that he has learned how to crawl up stairs. He has to be constantly watched, but with me right behind that diapered butt, he crawls up flights of stairs in seconds. Then begins his exploring and mischief making. His pediatrician commented, after having the stephoscope yanked from his ears, that Cooper is a "very curious boy". Yep! true! He is so funny and has the most naughty laugh that every one comments about.

Good kids.

Hopefully soon I'll be able to report we sold our house (God willing!...I also buried a statute of St. Joseph (upside down) the other day to help us) so we can really start to get excited about our move.

TTFN

Friday, July 15, 2005 5:09 PM CDT

SOME BIRTHDAY PICTURES FINALLY POSTED!

Okay, I thought I could stay away...but I just can't...also, I got pestered so much by folks at work that I figured I should do this...(also, I'm a little proud of my two little guys and can't quite stop telling people about them).

Here's a catch up as to what has happened since their birthday...

First, the birthday party...

It was fun and attended by quite a few people. We didn't know how many to plan for, so of course the way things work out I ended up having left overs for lunch for a couple of weeks. However, things at the party went off great and we do have some great pictures of the boys eating their birthday cupcakes...especially Cooper. Rob will post those soon.

The day leading to the party was a little different though...as Robin was running around hell and creation gathering material for the party, Jack decided to pull his mic-key out. I was stuck in traffic and ended up breaking a few traffic regulations to get home and turn around and rush him back to the ER at the U. I got there, ended up waiting close to three hours and then a doc came and pop'd a new one in in less than five minutes. Jack laughed the whole time and we had a good conversation on the way home. Meanwhile, Cooper developed a skin rash in the diaper region as a consequence of his swimming lessons. This prompted another urgent call to the Pediatrician who told me to bring him in in the morning. So Saturday morning, as we're getting ready for the party, I have to rush Cooper in to get some skin ointment and relieve his discomfort. Minor inconviences, but these guys certainly know how to make life interesting.

Last Sunday we stared at the upcoming week in a quiet dread. Monday was a clinic visit, Tuesday was a heart biopsy and cath, Wednesday was PT/OT, Thursday was pre-op visit to the Optho Surgeon and Friday was the eye surgery itself. This was all to end with a tearful good-bye to our Cardiologist friend who is moving on to bigger and better things.

Monday went fine with good x-rays, dramatic, but good weight gain and a perfectly normal echo. The blood draw was its usual dramatic event, but by the end Jack was happy and rolling around on the exam table for the Cardiologist. Tuesday was tough bringing the little guy in, especially giving his meds on an empty stomach because he was going to be put under during the cath. However, later that afternoon, immediately after the cath was done we received great news -- Jack's internal heart pressures were great! This was a worry back in March and April, and we saw some improvement back in May and June, but the nagging feeling kept knawing at the Cardiologist that he may be developing coronary artery disease, which could mean a second transplant would eventually be necessary. Also, the pacemaker was still on the table. With these cath results, all those fears were put to rest and Jack's pressures came back at above optimal. We now kid him by saying he has an athletic heart! The next day we received word of NO rejection.

All of this adds up to the fact that Jack is probably getting past the recovery phase and into the growth and catch up phase.

Today was Jack's eye surgery. The little guy was scared, as he knew where he was and knew that something always hurts when he's at the Hospital. However, the surgery went well and he was sent home ahead of schedule. We'll find out over the next few months if this surgery corrected Jack's eye problems (strabismus) and if he'll require any more help. With God's grace this will be it.

All in all it's been a great week.

I'll probably continue to update this site for a while, I find it's a hard addiction to break. Also, I think there are a few more good chapters ahead in this saga that need to be reported...

(Robin should post those b-day pictures soon)

Sunday, June 26, 2005 6:57 PM CDT

Happy Birthday Boys!

*new photos* **Birthday photos to come**

From Dad

This year started at 8:10 p.m. last year on this date, so in little over an hour we will have completed one revolution around the sun together. About this time last year, Robin was being prep'd for an unplanned C-section. I'm sure I'm like every other father out there, and cannot remember all the details of the event, things were happening so quickly, but I will never forget the feeling in my heart when Jack came out. Here he was at last, a lifetime of waiting and I finally had a son. He came out crying and looked small, but strong. Sixty seconds later, as I was describing Jack to Robin, out came Coop. The look on Cooper's face is etched into my soul, it was one of "hey wait a minute, I was pretty comfortable in there". Cooper looked around with these dark eyes and then started to cry as the reality of lights, sounds and breathing on his own caught on.

I went with the boys over to Children's Hospital, traveling through the tunnel I used to call my office (long story). One of the doc's who was pushing the incubator looked at me and said, "they're small but they're doing okay, they'll survive." The possibility of not surviving never occured to me until that moment.

The next 5-6 weeks were what I would imagine the first step towards heaven would be like. It was great. The boys were only in the NICU a couple of days and were soon transferred to the ICC to grow and get bigger. Robin, Grandma and I soon set up a routine. My favorite part was to stop by the ICC on my way into work, usually around 5:30 a.m. and swoop Jack out of his crib. Cooper didn't really like to be held, but preferred to stay in the isolette to sleep and cook away. He started to develop his personality already. For those brief moments I was all alone with my boys.

Our journey began shortly after that. On the last Saturday in July Jack got sick. I started posting at about that time. I didn't know what to do, to have this gift given to me and to see it possibly taken away and be helpless to do anything about it was too much. I did something uncharacteristic and asked for help (probably a guy thing). This soon turned into a quest to get as many people as possible to pray for my son. I knew God would listen to me, but I thought if He were overwhelmed with prayer for one little boy, he would comfort us and give Jack his second chance at life. He did and the prayers helped.

It's been a long road. The waiting was tough, the recovery afterwards was tougher and now here at home we have finally turned the corner and started to settle down into a normal routine. Jack's recovery has been helped so much by his brother, that I now know why God gave us Cooper. He is such a happy little boy, so strong and so full of life and joy that you can't help but be caught up in the enthusiam of his joy for life.

Jack has some hurdles in front of him still and we'll never be able to stop worrying. I guess that's the cross we'll bear for the rest of our lives. It's a small burden though when you see the smile creep across his face when he's in the back seat screaming with joy along side his brother. We all know Jack's character though and I'm sure that tough little kid will come through with smiles.

Again, I want to thank everyone for your prayers and other forms of support you have shown my family. We are stronger and better people for it. This closes the first year in Cooper and Jack's life, with many more chapters to come. With God's grace we will have all grown from this experience and I pray He shed's His grace on you.

Amen

p.s. I will keep this site up for a few weeks just to capture any more comments you'd like to share. Someday I'll share them with the boys, when they're old enough to understand and appreciate all the events that have unfolded. Robin will also update the page with some recent photos taken over the next few days.

Tuesday, June 21, 2005 7:21 AM CDT

**Some new pictures posted**

5 Days Until First Birthday!

From Dad

First swimming lesson for Cooper, what a hoot!

He loved it, just like putting a fish back in the water. He loved to splash with his arms and "cycle" with his legs...wasn't so sure on the dunking the head under the water thing, but excelled at the back and tummy float. I even took him down the waterslide...he liked the ride down, but not the splash at the end (water up the nose). I'm sure Robin will post some pictures soon...they're great and Cooper just loved his experience.

Jack, sat back and watched and got a little cranky because it was so humid in the pool. He also didn't smile that much, which isn't the Jack I know. I have a feeling he felt a little left out, so we promised him that he'll get to have swimming lessons later, as soon as he gets rid of that mic-key and it'll be just him and Daddy. I think he liked that because he ate a lot of solid food for supper later on...if he can keep that up it'll be the beginning of the end to that mic-key.

These are the things I signed up for.

TTFN

Monday, June 20, 2005 8:03 AM CDT

6 Days Until First Birthday

From Dad

Our first Father's day went pretty good...the boys and Mommy brought me out to a nice restaurant for brunch after Mass. I was a little nervous bringing in the boys to a quiet restaurant, you just never know what they'll pull or how inpatient they'll be. They slept through the Mass (I've never done that) and we're full of energy when we put them back into the car for the trip to the restaurant. The drone of the road put them back to sleep though and we were met with big, sleepy eyes as they awoke when we arrived. This is usually a sign that within five minutes all hell is about to break loose.

It didn't! We were seated right away and Jack sat over by Mommy in his car seat and Coop was in his car seat right next to me in a seat. Coop immediately flipped his big legs out of the car seat, slouched and put his feet on the table (he still had his socks on though). He then grabbed his big boy bottle and slerped down 4 ounces. Jack was just laughing and happy as could be in his little corner, playing with some of the wrapping paper from my gift. Both boys were perfect during the lunch and afterwards.

It was a good Father's Day.

This week is a busy one, with BOTH boys going to clinic on Thursday. Cooper is going to get an Echo as well as Jack, just as a check up and to compare it against his baseline back in August of last year. Grandma is coming to help hold Cooper down during this procedure, I just can't imagine what it'll take to hold him down because Cooper DOES NOT stop moving for anything or anybody (unless there's food involved).

Jack is doing good and we're hopeful that not only will this be confirmed on Thursday, but we'll see a further reduction of some of his drugs. We're down to giving him meds four times a day, with the major dosages at 8 and 8. We'd like to eliminate the midnight and 4 p.m. times just for quality of life issues...also, we'd like to keep the amount of chemicals in his body to an absolute minimum. Of course though, Jack will get what he needs and he's the one driving the bus.

Today is Cooper's first swimming lesson...that ought to be fun!

And this weekend is full of events around Birthday # One!

Wow

TTFN

Friday, June 17, 2005 2:16 PM CDT

**New photos**

9 DAYS UNTIL FIRST BIRTHDAY!

First Birthdays
First Steps (soon)
First Father's Day
First Swimming Lessons
First, First, First

Got to Love it!

Cooper just keeps getting bigger. Barely three weeks ago he was figuring out how to crawl, instead of rolling around. In the past few days he has learned how to pull himself up and stand. He think's he's hot stuff when he does that! It's a matter of days, I think, before that first step occurs.

Jack continues to follow in the same trajectory. He is working on rolling over, and getting sooooo close. He modulates his voice more and is starting to kick and flick his hands and arms around just like Cooper did a few months ago. He's doing great.

Monday is the first swimming lesson...should be fun!

Sunday is Father's day, should be fun!

We've come along way this year. It's an honor to still be here writing, knowing that I have two sons back home that are getting bigger and stronger. There were times that such a statement was in doubt. Jack still has issues to work through, namely feeding, growing and to continue to wean off some of the drugs he's on. I know he'll do this, I also know that he'll do it in his time. That's the hard part, but I am a patient man.

Last year on this weekend I was busy painting, putting up wallpaper borders and assemblying two red cribs. Robin was almost immobile, but carried the two with love. We went to bed tired, but so looking forward to the future.

Today, we're busy picking out items for our new home. Getting ready to disassemble two cribs, and then reassemble them. Have a busy, chaotic household. We always go to bed tired, but so looking forward to the future.

TTFN

Monday, June 13, 2005 3:14 PM CDT

13 Days Until First Birthday!

From Dad

Dad went solo this weekend, as Mommy took a well deserved trip to see another new baby! Us three boys spent the weekend eating pizza, drinking beer, making a mess, walking around in our underwear, playing cards, staying up to 2 a.m. and sleeping to noon and watching the Game. Ooops, that's what we'll do in a few years...actually this weekend was filled with running after Coop as he crawled everywhere, helping Jack 'almost' turn over, driving around to get everyone to fall asleep and other fun stuff. We even attended a neighborhood get together. It was a good weekend, but it's better when Mom's home.

Jack has his surgery set for July and is getting ready for his next clinic visit. He is doing great, almost ready to flip over and talking up a storm. Cooper is 150% boy, crawling everywhere and trying to get his hands into everything. He has learned how to stand up in his crib now and thinks it's cool. That has caused Dad to bring his crib down so Coop doesn't hurt himself by flipping himself out of it. I got the crib down, but Coop still figured out how to hurt himself by falling head first into the one of the sides of the crib. After the tears cleared, Coop is the proud owner of a little bruise on his forehead. I'm sure this won't be the first.

It's summer and we're loving it. Next Monday is the first swimming lesson!

TTFN

Thursday, June 9, 2005 7:22 AM CDT

17 Days Until First Birthday

From Dad

Getting closer to that big milestone of the first birthday. Jack is growing, developing and a generally happy baby. He has developed this habit of pulling on his feeding tube (when connected to the mic-key) and we always tell him "no" and move his little hand off of it. The other day we said "no" more forcefully and tried to act in a disapproving manner towards him . . . didn't work . . . Jack just busted-a-gut laughing at us and thought it was the funniest thing ever. I guess this is a good thing?

Cooper has the same opinion sometimes, we say "no", sometimes adding a little voice inflection and force behind it, when he tries to pull the electrical cords out of the plugs (and put the cords in his mouth, etc...) Cooper just looks at us laughs and continues doing whatever he wants.

I'd like to say that these kids are stubborn, but I know who their parents are...

Things are generally going good, both boys are progressing. Cooper is starting to stand up on his own (with the aid of furniture or his crib) and he thinks he's big stuff when he does it. Jack is kicking and talking up a storm, just like Coop back in February, so he seems to be doing great.

Everytime I start to think things are in the clear, something happens, so I'm knocking on wood and praying like crazy this time...

TTFN

Tuesday, June 7, 2005 7:18 AM CDT

19 Days Until First Birthday

From Dad

It looks like we'll try to schedule Jack's eye surgery to occur sometime in the next few weeks. Just like all the other bumps Jack has faced, it looks like we've caught this early enough that no permenant damage will have happened. Just we hate to have to put him through another surgery. . . at least he's young and won't remember this.

Other than that, he's doing great! He is moving his arms and legs more and more, gaining strength, trying to roll over, able to spend more time on his stomach and control his head and just acting great. He loves to spend time in our bed with us, sleeps so peacefully that it's hard not to put him in there with us.

He also loves his brother. . . it's so cute, he'll just stare at him for minutes at a time drinking up everything he does and sooner or later, mimicing things Coop does. (This is not always "cute" though.)

Cooper also loves his brother as he'll return the stare and offer a suggestion or two in his special language. Jack must understand, he flashes his smile and responds with his own gibberish.

Cooper is doing great, crawling around, playing hard all the time and just becoming a big boy. He has a new seat for the bathtub now and is just amazed at what happens when you slap your hands down into a tub filled with water. He loves it. He'll be a pro in a few weeks when we have our first swimming lesson. Coop also has developed this strange fettish, where he loves to be scared. I'll startle him with a loud noise and he'll jump back, then giggle like it's the best thing ever.

It's fun.

TTFN

Saturday, June 4, 2005 8:38 AM CDT

22 Days Until First Birthday

From Dad

Mommy took Jack into the eye doc on Thursday to see how his eye sight is doing. We've been trying to patch his eyes, in alternating days, to improve the focus and strength of the eyes. However, Jack throws a fit every time and he or we end up taking the damn thing off.

I guess it was to no avail anyway, as he has a condition called stombisis (I'm sure I butchered that word, I don't have it in front of me) but suffice it to say that he has a difficult time focusing on objects far away. This also causes him to blink a lot and have eye sensitivity. These are all symptoms Jack has, we thought they may be related to the drugs he's on, which they may have contributed to his condition, but all in all, he has an eye problem. The good news is that his vision is fine, it's just hard for him to focus. The bad news is that he'll have to have another surgery. We're not sure when, but we want to get it done soon so that there is no permenant damage done to his vision.

Another bump in the road, a small one, but still another surgery, possibly another night in the Hospital.

Cooper is doing great, crawling around like crazy and starting to get into trouble (he likes to pull on lamp cords). His two toofers are fine now, I think there's a score more ready to poke through soon. Coop's also looking forward to the 20th -- his first swimming lessons! Anyone who has met Cooper knows he likes to "cycle", so we figure he'll be a natural in the pool. It should be fun.

Other than that, things are fine. Building a house, selling a house, twin boys and busy as ever. I can't imagine it any other way.

TTFN

Thursday, June 2, 2005 7:32 AM CDT

24 Days Until First Birthday

From Dad

We're still unwinding from our trip to Indy, almost getting things back into their normal routine. The trip was fun, but the boys are off kilter a little from all the traveling and disruptions to their schedule and it's taking some time to get back into it. Cooper is also having a difficult time with his toofers, he has his two front ones, proudly displayed; but there must be a whole host of others ready to pop through, because he has been up in arms for a couple of days over it.

Jack is doing great. His PT and OT regime continues and he is making progress, getting closer and closer to rolling over. He is talking up a storm recently also, this is exactly like Cooper earlier this year. It's very reassuring to see Jack do as Cooper did, our fears of permenant developmental damage are eased at each step.

We are a blessed family. It's hard not to start to be retrospective this time of year, as we close in on the first birthday. Last year at this time I remember vividly, as we were knee deep in getting the nursery ready, attending birthing classes and shopping for baby stuff. We thought we were tired then. Little did we know what the next 365 days would bring. I'm trying to get my thoughts and feelings summarized as I prepare to wind down these postings, but one thing I want everyone to realize is that Jack and Cooper's story is one of inspiration and triumph...on so many different levels.

Most notably, I think it personifies the power of prayer. Last August, when we started this webpage we were on the precipice of the most tragic thing that could happen to parents. We were already vulnerable from more than a month's stay in the NICU/ICC with two premies, and then the news of Jack's heart condition pushed us into a void. Robin and I are determined and action orientated people, and to be in a situation where we couldn't do anything to help the one person we cared about most in this world was too much. I didn't know what to do, so following a personal philosophy of mine, I followed my gut. I started to pray. I asked everyone I knew to join in and then I asked them to ask everyone they knew to also pray. The response has been overwhelming and comforting to us. God does listen and sometimes all you have to do is ask. I could and still can feel His power at work in Jack and Cooper...and even ourselves. It is beyond description and I am so grateful I cannot describe the depth of my feelings. I will find a way to channel this gratitude into something permenant and constructive, I'm working on it... Anyway, if anyone is ever confronted with something in anyway similiar to what our family has faced, my only words of advice to you is to pray, have faith and ask God for guidance and mercy. He is our Father, and fathers receive no greater joy than to give to their children.

TTFN

Monday, May 30, 2005 11:37 PM CDT

27 Days Until First Birthday!

**New photos**

From Dad

1400 miles, 4 States, one Memorial Day weekend, 8 cousins, 3 sets of aunts and uncles, Grandma, old and new friends and two parents...add those all together, throw in the Corbo twins and what do you have - a great, but tiring trip!

The boys are travelers, if you can believe that. On both the trip down to Indy and back, they behaved just a notch below the perfect mark. Jack had a episode both ways dealing with gas, but as soon as that was rectified, things were smooth sailing. Both Jack and Cooper talked and sang along with Mommy while in the car.

Our strategy is as old as the hills, the morning before we left we played hard with the boys and tired them out, also prevented any naps before departure. Then, we loaded them into the mini-van, along with a ton of other stuff (kids come with a lot of baggage we have found out) and took off. They slept most of the way to Champaign (550 miles from home!). We used the same strategy the following day from Champaign to Indy (only 150 or so miles) and then on the return legs home. Of course, the way home was helped by the fact that the two boys were so tired from playing and being held by their aunts, cousins, friends, et. al...anyway...it worked.

We all had a good time on the trip. We saw cousin Ashley graduate from High School, a great ceremony and we are so proud of her. The boys met their cousins and aunts they haven't seen before. Aunt Brenda volunteered to babysit during Ashley's graduation ceremony so we could attend. A little strange being away from the boys, but it worked. I'm sure it was quite the work out for Brenda with Jack, Cooper and little Hope running around the place, but Brenda still had hair and a smile when we returned, so things seemed to work out just fine.

The boys really made huge strides by being exposed to their cousins. Jack was just soaking up all the love by being held by his Aunts. He also started to talk, almost roll over and was just the happiest boy while he was down there. He showed off his award winning smile and his 'almost girl-like' long eyelashes (a comment I don't care for all that much) and those huge blue eyes. Jack of course saw the reaction he could get when he flashed those eyes and he started to show off, and was quickly rewarded with more hugs, snuggles and holding. He only had a few fits, again all related to gas issues, but all relatively minor and short lived.

Cooper, the clown, was the bigger of the show offs of the twins however. His cousin Hope is virtually the same age and she can crawl around and is starting to actually take steps now. Cooper observed and is no longer doing the belly flop, roll over to move, but is actually starting to crawl around also. It was a great lesson. He learned how to eat "puffs", bounce on the trampoline with Cousin Adam (and later puke on him) and of course showed all his old tricks of his smile, devious laugh and just 'fun-to-be-around' personality. He was an instant party favorite and had all the females goggling over him also. His red hair, with a disappearing mohawk (finally growing hair on the sides of the head) was a huge hit as well. He soaked it up and was in nirvana.

Last night we drove from Indy to Champaign in order to cut our return trip back here a little shorter. Cooper was fine until about the Illinois State line and then started throwing a fit...teeth...he now has his "two front teeth" and it's not even Christmas yet. Cooper settled down with the help of some Tylenol and a bath. He then made Grandma's day by sleeping in her bed. (We actually think this is punishment as we had to sleep with Coop every other night of this trip and always awoke the next day with bruises and bags under our eyes.) Anyway, Cooper slept peacefully and awoke in a great mood.

We had a good time also. It was fun seeing the boys with other people (a nice break too) and seeing how much fun they had. Both boys really benefited from the interaction in their development. We also realized just how blessed we are to have two great babies. They both were just excellent travelers and hardly fussed at all. I thought being straped into a chair in a car for close to 10 hours would drive them nuts. It didn't. They were also very well behaved and just soaked the love up while visiting people. We are very, very blessed and some times you have to see your children from a different perspective to truly appreciate that. We always knew we were blessed, but I guess this trip showed a whole new dimension of our blessing.

Robin had a chance to relax a little and have her sisters play and spoil the kids. I got a chance to go golfing with the boys (a get a great sun burn). It was a good weekend. Once again, Congrats to Ash and thanks to everyone for making this a fun weekend for our boys.

TTFN

Thursday, May 26, 2005 5:36 AM CDT

31 Days Until First Birthday -- 11 Months Old Today!

From Dad

Okay sports fans, here we go, the decision has been made and we are off to the races...we are packing the Corbo clan up into the mini Van and heading to Indy for Cousin Ashley's graduation. The question of the day is, are Mommy and Daddy nuts for taking two eleven month olds on a nine+ hour drive w/o the help of narcotics? Stay tuned...

It should be fun and is a testiment as to how far both boys have grown.

Hope everyone has a great Memorial Day weekend, thank you Vets!, and I'll try to post while in Indy.

TTFN

Tuesday, May 24, 2005 8:57 PM CDT

33 Days Until First Birthday!

From Dad

****NEW PHOTOS****


A very successful day at the clinic for Jack, as his heart function has improved even more! His lungs look great and all his blood work is looking just fine. We cut back on the diuretics and made some adjustments on the immuno-suppressant drugs, otherwise, smooth sailing and good work Jack!

Jack showed off all his new tricks while at the clinic, he can hold his head up pretty good now, can "talk" and play games with his hands...which incidentially have five fingers on each, as he is so proud to show us everyday!

Jack's cold is pretty much over, he did a great job battling through his first virus while out of the hospital!

Cooper is doing great, just growing and getting bigger all the time. I took Jack to the clinic today and Coop stayed home with Mommy. An interesting thing happened, both boys behaved extraordinarily good. When we got them together again, they both smiled at each other and then started their usual tricks of one being awake while the other sleeps and the one that is awake causing all kinds of havoc, then switching off when tired. Unfortunately they have continued this game into the night and early morning for the past week or so and Robin and I are virtual walking zombie's because of it.

A very interesting story I must convey... I hope in a few decades when Cooper reads this he has developed a sense of humor that will allow him to laugh at it. I'm sure by the time he has kids he'll laugh...Anyway, the other day I came home and Robin said "check Coop's pants, I think he did his business in them." This is always a big event as it brings instant relief and energy to Cooper as he tends to keep these moments few and far between. I lifted him up to the changing table and the smell immediately told me that this was going to be a more involved diaper than usual. I opened it up and it wasn't so bad, but there was something strange about the color of this one. I looked more closely, as Coop's kicking around, and to my surprise, it's a piece of paper or cloth about a 1/4 inch wide, 1/2 inch long and no thicker than a piece of paper. I say, "Rob, get over here and check this out." She comes over and we both are just amazed that this passed through our son's system. We look a little closer and notice that there is writing on it. . . a closer examination reveals the word "Gentle." It looks like it's a tag from some piece of clothing that Coop probably ripped off and swallowed and it just passed through his system.

We were wondering if he would have a different word in his diaper today, but everything turned out normal. However, we now have a standing joke about Coop's "Gentle" movements and hope that he never decides to spell out a whole sentence.

TTFN

Monday, May 23, 2005 9:52 PM CDT

34 Days Until First Birthday

**New photos**

From Dad

The boys have yet to sleep past 2 a.m. without crying a storm and waking the whole household in the past four days. I don't know what the deal is, but if it's not one it's the other. Boo Hoo, I guess that's the life with twins...I may complain but I do love it. I love it the most when they finally fall asleep and I look at their perfect little faces, peacefully sleeping, snug and secure in their beds and realize this is what life is all about and I'm happy.

TTFN

p.s. Jack has clinic tomorrow, and gets his stitches out from the shunt revision...details to follow.

p.s.s. I signed Cooper up for swimming lession in June, that ought to be fun.

Friday, May 20, 2005 11:43 AM CDT

**New photos**

37 Days Until First Birthday

From Dad

The boys both are battling through their colds; Cooper looks like his is pretty much gone. I don't think it's slowed him down at all though, that kid literally never stops moving. He does the head-bob sucking down a bottle while standing in his exersaucer, and then wakes up, smiles and starts to jump up and down again. Lately he has been "cycling" so much, jumping up and down and just moving while drinking bottles down left and right, that he makes himself sick. I had to walk around the house last night with one sock on because he decided to get sick on one of them.

Jack is doing fine with his cold, probably a day or so behind Coop. He is really starting to show us more and more things everyday. Yesterday he was making sounds with his tongue and gums working together, also moving and grabbing things and almost...almost ready to flip himself over. This is exactly what Coop was doing several months ago. So, things seem to be working good for Jack.

We're doing fine as we try to squeeze in as much sleep as possible in between the different events on our schedules. However, we're loving it.

TTFN

Wednesday, May 18, 2005 1:17 PM CDT

**New photos**

39 Days Until First Birthday

From Dad

Mommy brought the boys to the Pediatrician yesterday for a normal checkup...also, both are sick with a cold. The Doc confirmed that this is just a head cold for both of them, their lungs are fine and this is more of a nuisance than anything. Amen, the spector of RSV was creeping into our fatigued minds probably because we are very sensitive to illnesses, especially with Jack.

Anyway, the doc examined both boys . . . while putting his stethoscope to Coop's chest, he reached up and grabbed it with both hands and practically ripped it out of the doc's ears. "Wow, he's a strong, active one", was the reply. "No kidding", Robin thought, as this little guy turned big boy is constantly on the move. According to their measurements, Coop is taller than 80f his peers and weights more than 50 Still tall and slender, and he keeps climbing the charts. I think he's over 22 pounds now, a far cry from that skinny stew chicken of 2 lbs 13 oz last June. The doc also said he has great muscle tone, especially in his legs -- yes!, we know as he often kicks things and bounces in his exersaucer just to make noise...he is so damn cute and funny! We are to expect that Coop will level his growth out to a more uniform pace, but that he will probably be a tall one.

Jack also had good news, despite having only half a head of hair and 20 stitches. He is climbing the charts also, don't remember the exact numbers, but he is growing. We are to expect that in the next year, barring any more set backs, that he'll enter a growth spurt and close the gap with Cooper. Jack is healthy in all aspects otherwise, just behind on his development, but he has a legit reason!

It seems as if Jack has started to make progress in the developmental arena lately though. Ever since his head shunt revision he has started to talk and modulate his noises more and more. We're getting closer and closer to "dada" (much to Robin's chagrin, I think Coop can say that every now and then, even though he probably isn't trying. Apparently, "dada" is an exhaled sound which is easier than "mama", so "dada" almost always comes first with kids -- fair?, I don't know, but I like it!). Back to Jack, we are to continue to work with him and get him PT/OT therapy and maybe push him a little in this regard. That's a little harder than you think though, as he's gotten use to living his life on his back and it's hard for us to cause him any discomfort knowing what he's been through. We'll do it though.

That's about it for now, things are looking good.

TTFN

Tuesday, May 17, 2005 8:04 AM CDT

40 Days Until First Birthday

From Dad

Forty days and forty nights, wow, we're getting close to that first birthday.

We'll both boys have the cold now, and for good measure they gave it to their old man also. It appears to be just a head cold and not in the lungs, which is good news, more of an irritant than anything. Of course, this is the first time the boys have been sice at home. Jack's been sick with a virus while in the Hospital, but there he was being treated and things were running its course, here's there's a little more of the unknown and that's the scary part.

Anyway, things appear to be fine and the boys are scheduled to see their pediatrician today anyway.

The past few days have been frantic preparation to get our house ready to put on the market. It gets listed today, so if you know someone.... just kidding.

I gave both of the boys some Tylenol last night right before bed time. It wiped them out...they actually both slept through the entire night! Cooper tossed and turned and flipped and flopped, but still slept. I had to give him a bottle about 3 a.m., but other than that things were fine. His crib though looks like a little battle zone after he is done with it. After his bath I have to wrestle him to get his diaper and clothes on. He flips over on his stomach all the time now, which is fine, but when I'm trying to get cream and vicks on his chest, it makes a mess.

Jack sleeps pretty peacefully if his stomach isn't bothering him. Last night was one of those rare nights that it wasn't. He was stretched out all over, rather cute.

Holding in there...

TTFN

Sunday, May 15, 2005 10:38 AM CDT

42 Days Until First Birthday

From Dad

It's been a few days, as we've been busy trying to get this place ready for the market. The weather hasn't been helping, not have the boys.

We were up at some point every hour last night with one or both of them. I can't remember the reasons why, but suffice to say as soon as Jack was placed in our bed he was happy and slept for several hours in a row without making a noise.

Jack is feeling a lot better than he was at the beginning of the week. His puffiness is down and he is almost back to his weight of a week ago. He has progressed in many ways also, he modulates his voice and is grabbing and holding more things. His dextirity is better. His eyes are almost back to normal, but they do wonder more than a week ago. We're hoping this is still a residual from the surgery.

Cooper is doing great and is 200% boy. I wrestled in High School and now I know why. I get him dressed on the floor now just to try to contain him a little better and prevent my lower back from breaking. Today, I had to get him in a full nelson just to get his pants on. The little guy just skirms and rolls all around...teeth poking out, and everything. Coop is feeling the best, he has a head cold that is causing him to be congested and sneezy, however it hasn't effected his energy level (...is that good or not?)

Anyway, things are normal around here. I neglected to mention that last week Jack was released from Home Nursing Care, because of all the progess he has made while home. We were having a nurse come out once a week just to check on him, but he is doing so well along with Robin's honorary degree in nursing makes such a service unnecesary now. That's progress. Jack is still getting his PT and OT therapist 3X a week.

We also had our first baby sitter come and take care of the boys and Mom and Dad got the house in ship shape. Of course we were merely fifty feet away from the boys, it was still a big step for us.

Jack is scheduled to go to the Hospital on the 24th to get his stitches (20 of them) out and also for his heart clinic visit.

TTFN

Thursday, May 12, 2005 4:36 PM CDT

45 Days Until Birthday

From Dad

Today started out looking like it was going to be another Monday. Well sorta, I left for work bound and determined to get back into our routine. I got Jack up at 5 a.m. with me and carried him downstairs to watch the Animal Planet while I got ready. Jack watched his show and I changed his diapers, all systems go so far! I bring him upstairs and put him in bed with Mommy, which he (both actually) loved. I go to work. The phone rings about 8:30 and it's Robin saying Jack's been retching again, quite a bit. This was the primary symptom of his shunt failure last time. However, his behavior and appearance in general were normal.

We decided to give it some time, but another call at 9:30 or so only showed more retching. I called the Neuro Surg department and the Transplant clinic to get some advice, thinking they'd ask that we bring Jack in for a look. Several phone calls later things are about the same, but we have yet to actually talk to a caregiver. Robin then asks that I come home, thinking that we may have to head into the Hospital and/or Cooper just vomited all over the place, so he is probably sick with something.

I head home; when I get home Rob's talked to both of the clinics (Neuro and Heart) and has some good advice. Basically they want to wait and see if any more symptoms show up, saying it's quite possible Jack's anesthesia is still wearing off or he is feeling nausea from the Tylenol 3 he is taking. I get home and Cooper is jumping up and down in his Exercer-Saucer making more noise than teenage girls at a boy-band concert. Mom has a headache, but is relieved from the conversation with the caregivers. We watch Jack all day, and although he has retched a few more times, he appears to be fine and we think he is just getting that stuff out of his body.

To confirm this his weight is up quite a bit, 17 pounds 4 ounces . . . on Sunday he was 16 pounds 4 ounces, so a pound of weight gain in four days must mean he has some junk still backed up in his body. He's eliminating his waste a-ok, so this should equal out in a relative short time.

Jack is a strong boy. He has met this challenge and beat it hands down. Again.

Also, Cooper's vomiting incident this morning must have just been a way to pile the stress on Mommy, because he is feeling good and as active as ever.

Almost back to "normal"...

Wednesday, May 11, 2005 1:36 PM CDT

46 Days Until First Birthday

**New photos**

From Dad

Well we got Jack home this morning. Everything is working fine and he's doing okay, minus a little hair.

Good news in the functioning of his heart through this stressful time and his flourishing brain! Jack was a little fussy today as he had some residual pain from the cuts to his head, we'll get the stitches out in a couple of weeks.

It tiring for both of us, as those who know us know that Rob and I are very organized. Events like this are why we're organized, but it also takes time for us to re-establish our patterns. We also have found out that the boys are so much happier when they are on a schedule. So, hopefully starting today we'll get back on track and over this soon. Robin is doing a great job establishing a pattern for these kids, everyone benefits from her vigilence.

Cooper is out of kilter also from the disruption, but was happy to see all of his family together again this morning. That little guy is going through a growth spurt again, he is getting so big, but still so cute.

While at the PICU we learned of another family with a newborn with Cardiomyopathy. Deju vu all over again. We wish them God's speed, and realize we are lucky and a blessed little family.

TTFN

Tuesday, May 10, 2005 8:23 PM CDT

47 Days Until First Birthday

From Dad

Sorry I had to leave so abruptly last night, Jack was starting to wake up from his surgery and was pretty mad. As a further testiment to this kid's will it took seven (7) hits of the narcotic fentanyl to get him to calm down and go back to sleep. We stopped this drug this morning and have been on Tylenol 3 all day and are now just on Tylenol as we gently glide him back to earth.

Jack's shunt revision went well. It looks like it has done the trick. As I mentioned yesterday, we know our little boy and we got him in here in plenty of time, well before any damage could have occurred. We also found out his heart is working great and his brain has grown and has not suffered structural damage from his episodes immediately after the transplant.

Today started with blood draws, CT scans, X-rays and then plenty of sleep. Everything turned out normal.

Oooops, got to go, they're transferring Jack to the step down now and he'll be going home tomorrow AM. I'll continue later.

TTFN

Monday, May 9, 2005 10:34 PM CDT

48 Days Until First Birthday (Supplemental)

From Dad

Jack had another surgery on his head to replace his head shunt this evening. All things considered, things went very good.

Yesterday, Mother's Day, was a good day. The four of us went out driving to look at our new home site. Cooper was the fussy bucket of the day, throwing a fit while we attempted to talk to one of our friends in the neighborhood. Turns out, his gift to Mommy, was two shinning white teeth poking through his gums. After a quick stop to Walgreens to pick up some oraljel, he was a happy camper and even managed to take a long nap.

Things were going great. We got home in the evening, gave the kids their baths and got Cooper to sleep for the evening. We were giving Jack his meds while he slept in his swing-- his favorite position in the whole house, just relaxing and swinging away. About 9:00 p.m. I picked him up to carrying him up to his crib upstairs. I got upstairs and he started to throw a fit, just crying unconsolably. I brought him downstairs and he was comforted and fell asleep in Mommy's arms for almost two hours. We then attempted to bring him upstairs again and again he just through a huge fit, and this time his crying was a little different. It was a cry of pain, not a cry of fatigue or hunger. We put him in bed with us and he eventually cried himself to sleep. About a half hour later another crying spell that lasted about an hour. Jack was not only crying like a mad man, but he was retching like crazy. It was such severe retches that we considered calling an ambulance we were so scared. This cycle continued to about 4 a.m. when finally we figured this wasn't a stomach thing, but something more.

Jack had his worse spell at 4:00 a.m. at which time I called the Transplant Pager and they told me to bring him into the E.R. We plucked Coop out of his crib and tied him into his car seat. Robin and I dressed in under a minute and through Jack's med's in a bag. We were out the door in less than 10 minutes after that call. I broke a few laws on the drive into the U of M.

By the time we got to the U Jack had fallen asleep from exhaustion but was still in considerable pain. The E.R. doc checked him out and called in consults from Cardiology and Neuro. Blood draws, x-rays, an echo and CT scan later it was determined that Jack's heart is working perfectly. His lungs are great, never better, and his blood chemistry is pretty much all at optimal levels for him. The CT Scan was compared to the CT Scan performed right after his head shunt surgery back in December. Great News again - the swelling in his ventricals is all but gone, and his brain has grown to take it's proper place and size. No damage! However, a clinical exam by the Neuro Resident showed that Jack's fontenelle was plump and pulsing. This combined with his irritability, retching and loss of apitite were classic signs of shunt failure. He said we need to get him into the O.R. today.

Okay, they told us this could happen, but we were still not ready for it. Another flipping surgery!

Anyway, Jack waited around the ICU all day long as he was a "non emergency, unscheduled surgery"...meaning he was at the end of the line and had to wait for an OR room to open up. He got in about 8:00 p.m. for the shunt revision. He finished up about 10ish and all reports are that things went very well.

We cleaned him up after wards and got him all tucked in for the night. We could tell a change in his behavior almost immediately, including hunger as he was so thirsty he sucked down close to 4 ounces of water afterwards (he was intibated and extibated for the surgery also, so this didn't help his throat at all).

I'm staying the night to make sure things are fine, but expect it to be an uneventful evening. Mommy is going to pick Cooper up at a friends house and get him home.

I hope this is it for a while.

I'll write more later.

TTFN

Monday, May 9, 2005 1:21 PM CDT

48 Days Until First Birthday

From Dad

FYI...Jack had some problems last night, we're scheduled for a head shunt revision surgery this afternoon. Everyone says this is not uncommon and things will be fine.

More to follow...

Pray

TTFN

Wednesday, May 4, 2005 8:00 AM CDT

53 Days Until First Birthday!

From Dad

The first couple days of our family being completely on it's own is going pretty good. Grandma left on Monday morning, with a few tears of joy, and things have been going pretty good. Although, the boys do miss their Grandma and can't wait to see her again at their Cousin's Graduation in a few weeks.

You can feel Jack getting stronger. When he first came home from the Hospital when you lifted him up he felt like a sack of bones. He had little strength anywhere in his body and you had to provide support to all his limbs, head and body. Now you can feel the muscles in his body get stronger. He rolls over to his side (not all the way over yet), has almost 100% head control, moves all of his limbs in coordinated manner, grasping things and transferring them from hand to hand and his eyes are much more coordinated. All of this is thanks to the hard work of Mommy and his PT and OT therapists. Jack is really starting to become his own little boy, and it's amazing.

Cooper is doing just fine. Still no teeth, but he has had a few days of relative calm, very untypical for Coop, in which he slept alot and was a little subdued. Teeth? possible and probably part of the issue. I think he's getting geared up for another growth spurt as well. I can't believe it. This kid is going to be big!

Mommy brought the boys into her office the other day for a much belated baby shower. Of course Jack and Cooper received alot of adoration and soaked up all of it.

We're recovering.

TTFN

Saturday, April 30, 2005 8:50 PM CDT

57 Days Until First Birthday

From Dad

**New photos**

A joyous return trip to Children's Hospital to see old friends started our weekend. Cooper showed off his dramatic 18 pound weight gain since most of his nurses saw his last. Also, he showed his personality by smiling, dancing and carrying on like a little boy. It was fun.

Jack also showed off. Last time most of these nurses and doc's saw him he was ashen white, in a coma and ready to be packed away in an incubator for transportation to the U of M. Now he was kicking, a beautiful and healthy pink color, smiling and having a great time. It was fun, people couldn't believe how great our little miracle baby looked.

The last time they saw us we were beside ourselves with stress and grief, shuttling between two Hospitals to see our two boys. Our time at Children's was such a mixed bag of emotions, the first night wheeling Mommy up from the OR Recovering Room to see her two little babes. Watching them grow. Taking Cooper home in his car seat, having to prop three blankets around him to keep him upright...and now he is literally spilling out of his car seat. The day Jack crashed. The day Jack was transferred to the U. Sleeping at Children's parent's room. Baptisms. Holy macro, it all came back in streams as we walked through those doors today. However this time, we all came back walking tall and proud, one complete, whole and recovering family. It was all worth it.

Yesterday after our good news at the Clinic we did the victory lap up at the PICU at the U. We saw some of Jack's ICU doc's and nurses, and it also was great to see them, catch up and LEAVE! Jack appreciated that last part the best, as you could see the relief on his face as we left. (Jack apparently, according to Mommy, starts to cry and fuss when they pull into the parking ramp at the U -- he knows!)

A pretty good weekend.

More to Follow...

TTFN

Friday, April 29, 2005 8:11 PM CDT

58 Days Until First Birthday!

From Dad

Yeah, Yeah, Yeah...Good News, Good News, Good News!

Jack's echo today was a success, he came back with an ejection fraction of 79. . . above normal! While waiting for a heart it was from 9 - 15%, normal is in the sixties, so our little bugger really poured it on these past three weeks and is doing great! The prayers continue to work! The spector of another surgery is no longer there, no pacemaker! He is gaining weight, developing, getting stronger and acting more like a kid! Praise the Lord!

The Speech Therapist said his best medicine was the wonderful role model Cooper plays...praise the Lord for giving us two babies, I understand why now!

A great day, well worth the wait this past week.

We have been cautiously optimistic all week, because Jack has just acted better. But to actually hear the words from the Cardiologist that he is doing great, is beyond words. Keep it up "bubby"!

This is great. Tomorrow we make a triumph tour and will visit Children's Hospital to see some of the boy's old nurses. We will carry nothing but good news with us as we share the joy of Jack and Cooper.

More to follow...

Monday, April 25, 2005 7:15 AM CDT

62 Days Until First Birthday!

From Dad

Tomorrow turns the twins ten months old. Wow, it seems like such a long and short time. A lot has transpired in this time; at times it's been so slow and now I look back and it was so fast. I remember last year at this time, full of anticipation and wonder as those two little boys were growing inside Mommy. We loved to listen to their heart beats on the ultrasound machine we rented. We were always worried when we couldn't find one in the same spot as the night before, but it turns out they moved quite a bit.

Speaking of moving, Cooper hasn't stopped since those days a year ago. That kid flips, flops, squirms, dances, kicks and does everything in between and just can't sit still. Until he is tired that is, then he falls into a deep sleep. Two speeds -- sleep and hell's bells. It's so funny when he wakes up from a nap. . . he'll open his eyes with an expressionless face and look around trying to focus. Then he'll arch his back and rub his eyes...then he'll smile and start kicking like there is no tomorrow. Mommy has taught him the meaning of "up" now...whenever he wants to move to a different toy or position, he raises his arms in the air and starts to yell...Robin says "up?" and Coop starts to smile...he knows how to work it too.

Jack is doing great. He is almost back to sixteen pounds, still not quite to where he was prior to his rejection incident in early March. However, this weight is muscle, bone and brain as he is really starting to grow. His hair is filling in and it's thick as can be. He's developing as expected, albeit about 5 months behind his brother. He's kicking and starting to really talk. His little voice is so cute to hear...I remember sitting at the computer at the PICU in November and actually hearing Jack scream and cry through that damn tube when they would suction him. I thought that was music, just to know he could make sounds, now this is even more incredible.

Looking ahead with optimism. This Friday is another clinic visit and of course that always has it's own drama associated with it. Jack's heart has to show signs of complete recovery from his rejection episode in order to avoid the spector of another surgery for pacemaker wires to be implanted. We think he has shown marked improvement in his behavior and vital sounds, so hopefully that's a harbinger of good news. If everything is fine, we plan on making a little trip to the ICC at Children's this coming up weekend to see the boys' nurses there.

And then, after initially coming for ten days, but ending up staying ten months, Grandma is planning on leaving this weekend (I think Monday the 2nd actually). It will be a bittersweet moment as she had been a very big help to us during this time, but also it is a sign that we all are truly in a recovery stage. I think Grandma has grown a little attached to the boys having spent so much time with Coop while we were at the Hospital and then watching Jack recover these past few months. I don't know what we would have done without her. . . two babies with one in the Hospital, at times both, taxed us to the limit. I think the boys have grown a little attached also...however, maybe she'll be back up for the birthdays in 62 days and we may see her at Cousin Ashley's graduation party in May (we are actually thinking of taking a trip out of the State with the boys -- a sure sign of things getting back to normal!)

Praying for continued strength and recovery, and especially for a good report this Friday!

TTFN

Thursday, April 21, 2005 7:56 AM CDT

66 Days Until First Birthday

From Dad

**New Photos**

Both boys are doing great.

Jack is gaining some weight, although there have been a few times where he seems to have problems taking in food, he otherwise is growing and getting stronger. He is stretching and moving around like you wouldn't believe. He is Cooper in December/January, exactly as he should be! His PT and OT therapist are very pleased with his progress!

Cooper is doing new and amazing things everyday. He isn't crawling yet, but for those who have met him you can see that he may just skip that step anyway. He loves to stand on his feet and dance, yesterday I had him leaning up against some furniture and standing all by himself for up to 10 seconds at a time. He's such a big boy!

Sleeping habits aren't quite where we'd like them to be...neither Corbo boy likes to take naps during the day over fear of missing something important. They have a routine for going to sleep at night down, however, this routine includes daily wake up calls at 3:00 a.m. for Jack and 6:00 a.m. for Coop. Usually we're able to coax both boys back to sleep (I do Jack and Rob does Coop), but overtime this constantly interrupted sleep is taking its toll on us. A small price to pay.

We're doing okay, just keep it this way.

TTFN

Monday, April 18, 2005 4:26 AM CDT

69 Days Until First Birthday!

**New pictures**

From Dad

It was a pretty good weekend. It seems as if each day the boys are doing something different, progressing a little step at a time.

There has been several notable improvments in Jack over the past few days. First, we monitor his blood pressure, temperature, in's and outs and weight everyday. All are looking real positive. His blood pressure has taken a noticable change for the better. We don't know if it's this additional nebulized albuteral drug that he has been on for the past week or if his new heart just decided it was time, but his pressures are looking real optimal. He is starting to gain some weight also. We were worried for the past month that his weight gain was stagnant and what did this mean.?. Recently he has started to put on about a 1/2 ounce to ounce a day, perfectly in line with expectations. We know that this weight gain is muscle, bone and brain, because he does not look puffy or water logged like he has in the past. He also seems to be going #1 and #2 like he should everyday, still with some chemical help via diuretics, but those have been cut down and he's taking over for himself. Things are looking good.

(The diuretic wean has started and will probably be longer than the narcotic wean, but less painful on Jack. He currently is one two drugs, Aldactone (.8ml/2x) and Lasix (.8ml/3x) and would love to get him off of these as well over fears of long term side effects. Time...

We are of course ever mindful that Jack likes to play tricks on us from time to time, so it's impossible for us to be totally at ease with his health situation. Also, we have two weeks until his next Clinic visit, at which time we'll see how his heart is functioning and if the thought of another surgery, for a pacemaker, may be required.

Jack also is coming along developmentally. His PT/OT sessions are really starting to pay off and you can feel the increase in strength in his neck and back from his workouts. Jack has his moods though, he knows the name and voice of his different therapists and sometimes he doesn't want to see them. If he is feeling a little tired and hear's the OT therapist coming in the door he immediately starts to fuss and cry. However other times, he shows off all his new tricks and smiles throughout the workout. For instance, Jack loves to stretch every limb and muscle in his body, he can arch his back and limbs in a position exactly like Cooper's before Cooper starting turning over. Jack is also kicking and talking much more lately and is slowly mastering head control. It brings tears of joy to see this and we can only say keep it up Jack!

Cooper is a spit fire. He starts moving his little body about 6 a.m. and demands to be put in bed with Mommy at that time. He then proceeds to flop around like a fish out of water for a half hour or so and then falls back to sleep. Mommy gets him up around 8 a.m. and Coop starts to move again . . .kicking, screaming, throlling, grabbing, rolling around, etc...he doesn't stop until around 7 p.m. after his bath. He must consume 1000's of calories a day doing this and requires his parents to consume 1000's to keep pace. He continues to grow and get bigger, he is definitely on the tall and slender side of things, pushing 30 inches and about 21 pounds now. A far cry from that skinny little chicken in the incubator at Children's Hospital last summer.

These kids are great, but they take everything we have. We love it though, and can't think of a better way to be exhausted.

I pray every night for these two miracles and know God is listening. The gravity of what happened and what Jack had to endure has not hit us yet. It is impossible for us to fully relax yet though. We are always going to be fearful to be apart from these kids...that nagging feeling in the pit of your stomach that something is going to happened ... has happened to us. It could happen again. I look at Jack sometimes and see him "busting a gut" laughing at his brother or Mother and know God loves us and see His miracle manifest in my kids. I also see Jack laying in the Hospital hooked up to machines, Dr's beating on his chest to keep his heart and pressures going and I see a little baby who was a narcotic fean. It is impossible to surpress or forget these memories, even though I know it could have been worse. I was flipping channels the other day and caught 10 seconds of a commercial for that Denzel Washington movie about his son who needed a heart transplant (I think it's "John Q Public"). Denzel says "I will not bury my son"...I think I may sue MGM over that line because I said it first, prayed and demanded that a million times over this past year. I am slowly changing that prayer into a "Lord, let my sons bury me" prayer (a long, long time from now!). . . the way things ought to be.

I guess thats the crux of how we feel right now. We can see how things ought to and should be, but are almost too scared to really let go and live that way. I guess we have our own healing to do.

TTFN

p.s. My trip to D.C. in the Army was postponed, probably to be rescheduled soon.

Friday, April 15, 2005 12:13 AM CDT

72 Days Until First Birthday!

From Dad

Yesterday was the first public outing for the boys, as they accompanied Mommy and Grandma to Daddy's work. It was a proud moment for us to show off the boys, unfortunately at times it was a little overwhelming for the kids as they cried most of the time.

I think it was just too much sensory input for the boys who have spent the past six months in seclusion to prevent infections. Then to be thrust into a room full of people and other babies (there were 4 other babies born this year in my department) was a little too much.

Cooper recovered pretty quickly though. After he figured it out that Mommy, Daddy and Grandma were close by, he started to act his normal silly self. Especially after the gathering when he got in smaller groups in Daddy's office. Soon he was jumping up and down, dancing and giggling for everyone, especially the girls. He thought he was hot stuff and I think most of the people around him would agree.

Jack took a little longer to recover, but after a little food and a couple of dirty diapers he too started to smile. Unfortunately, his personality was reserved for only a few people who poked their heads into my office. Jack really started to chirtle and have fun at home though. Later in the evening, he decided that taking a bath isn't the signal to go to sleep for the night. Even though this has been the pattern for the past few months. He wanted to stay up and watch the Apprentice with the big people. He laid around, kicking, screaming, chirtling, smiling and giggling. It was music and made anything on TV less appealing.

It was a fun time bringing the boys out. It was nice for others to see how far they have come and how strong they really are.

This outing was preceded by Jack's visit to the Pediatrician on Wednesday. "Wow, Jack has certainly grown and filled out" said the Pediatrician. "He is definitely in the recovery mode now", as Jack decided this was the time to show off all the new skills he's learned in the past weeks. More music to our ears. Jack did get a couple of his immunization shots afterwards, as he's finally ready to start getting those again.

Making progress...

TTFN

Wednesday, April 13, 2005 7:43 AM CDT

74 Days Until First Birthday!

From Dad

Today is immunization day for Jack, as he visits the pediatrician later this morning. Jack's immunization schedule was suspended after he got his transplant and we were given the green light to start them up again recently. I don't remember the exact shots he's getting today, but he's back on track. He'll have his brother there to comfort and protect him and if both boys need a little help, well, Mommy is there ready to comfort her babes.

A positive sign that things are getting normal.

Jack seems like he is getting bigger and heavier, something that has been weighing on our minds for the past few weeks. It seems that he has had a hard time gaining weight and growing since his rejection episode at the beginning on March. He still isn't back to his weight before this episode, but that's okay, since most of that weight was stored junk in his little body. Since getting all that stuff out, Jack has just jumped forward in all areas of development. So, the weight thing is a little nebulous of an issue for us.

Cooper doesn't seem to have a problem with wieght though. He continues to grow and get stronger. It is nearly impossible to keep him still now. I give him a bath at night and have developed the skill of putting a diaper on him while he's upside down, wiggling and kicking like Pele. Then the hard part happens trying to get his clothes on. I have to hold him down sometimes and rush as fast as I can to snap those bottons. I don't know how many curse words I've used at the manufacturer of these clothes for putting so many buttons on.

We're still too apprehensive to think that things are normal or too far into the future. We've tried that before only to be hit over the head with another trial or tribulation. The next big test will be on the 29th when Jack goes to the clinic again. We're praying his heart is fully recovered and he doesn't need a pacemaker. If he needs it, he needs it, but we'd certainly like to avoid another surgery, general anesthia, intibation, hospital stay and more docs and nurses.

TTFN

Monday, April 11, 2005 12:16 AM CDT

76 Days Until First Birthday!

From Dad

A pretty good weekend, took the boys for walks and generally played with them.

Last night I watched TV, which in itself is news, but I watched that new show Grey's Anatomy. Besides the regular TV hype, the episode was about a man being brain dead and harvesting his organs for transplants. It hit me hard, knowing that somewhere there is a family that made that decision for my son.

I don't think I'll be watching medical shows any more.

Jack is doing fine, he looks like he's gaining weight, but the scale says he's holding steady. We're not sure what to believe, but just by watching him you can tell he's getting better, bigger and stronger. I think we'll trust our instincts.

Cooper is a little dynamo, he just plain never stops. Even when he's sleeping he's floppy around like a fish. I don't know where he gets that energy, but it's hard to outlast him.

I can't wait until they get a little bigger and I can bring them to the ballgame. That'll be fun.

TTFN

Saturday, April 9, 2005 4:49 PM CDT

78 Days Until First Birthday!

From Dad

New Photo's Posted on Thursday ("Outback")

Yesterday Jack had a clinic visit to see how things were progressing in his new heart. It appears from lab work and an Echo, that there in "no-change" from his clinic visit two weeks ago. In other words, he's better than he was at the beginning of March when he had that episode of "rejection", but still not back to baseline yet. The Cardiologist wants to give him three more weeks to see how he does. If at that time there still is no change, then we'll schedule a heart catherization in which they'll put pacer wires into his heart for a fifeteen minute trial run. If this shows better pressures in his heart, then we'll know at that time, that it's time to schedule Jack for another surgery to get a pacemaker.

Not the best news in the world, but again it's better than where he was and it's not as if Jack needs this pacer (if he does!) to keep him alive. It's really a preventive measure done very early to give him more energy, get his fluid balances in line in his body and keep this heart around for a whole lifetime. We are of course praying that we don't have to put him under one more time. Especially now that he has matured and healed so much.

You would not know that Jack's new heart isn't working perfectly though. He is so much more active, talking, coordinating his movements and even starting to eat baby food and drink form a bottle a little bit. He still gets the majority of his nutrition through the G tube, but it's a start. He loves his brother and watches and mimicks everything he does.

Cooper is doing fine. He has yet to grow hair on the sides of his head, but down the middle it is getting thicker and thicker by the day. It's going to be a nice head of hair, thick and wavy in the back. I just hope he has some on the sides.

Now that the weather is nice we take the boys for a walk around the block everyday. They're getting use to it, and starting to like it. The hard part is the wind and the sun...the wind takes their breath away and the sun hurts their eyes. Especially Jack, some of the meds he's on make his skin and eyes especially sensitive to bright light, so it's understandable his fussiness with the sun directly in his face. But, over time they are getting use to it and I hope will soon start to actually like going outside...because...these kids will grow up loving the out doors and will not become egg head kids stuck inside all the time.

Saturday's are daddy's day with the boys, Robin usually goes out for a while for a little shopping and sanity checks. She's out today looking at different stores for ideas for our new house, as we have certain milestone dates to make decisions. The boys have kicked my butt today! They are fun, and sometimes I play with them hard just to try to tire them out. Unfortunately, they usually win and I tire out first. I have a few decades of experience on them though and can usually out-fox them, I suppose that too will disappear over time.

Mixed results yesterday, but we're praying Jack can get his heart to heal itself completely. We don't want him to have another surgery.

TTFN

Thursday, April 7, 2005 8:04 AM CDT

80 Days Until First Birthday!

**New photos**

From Dad

A couple of really good days for the boys.

Jack continues to gain strength and is slowly re-gaining the weight he lost from his little episode at the beginning of March. We have experimented with a lactose free formula to see if that helps with digestion and we think it has. However, last night was a rough night as he was moaning and crying most of it with gas. We put him in our bed, after we were both virtual zombie's from lack of sleep, and magically Jack felt better.

In reality, I don't think Jack is doing this on purpose. We feed Jack a continious drip of food during the night and sometimes I think he just gets full and can't get ride of the gas easily. That is the major reason for us changing the formulas around also.

Besides this issue, he is just doing great. He is clear, his eyes are working good, he is gaining strength in all parts of his body, he is coordinating his movements and he is interacting with his brother, mother and his toys more often. It's great to be part of this.

As we've always said, the best medicine is his brother as Jack watches Cooper like a hawk all day long. It's funny, a few days later Jack will start to do the things Cooper does. For instance, Coop is fascinated with the touch and texture of different objects. He is constantly rubbing his fingers over material to see what it feels like. This includes my face sometimes...and hair, which is usually followed by a tug...Robin knows this better than I do. Anyway, now Jack is doing this. A little wave of his fingers over anything that is different, a touch to my face to see what is there and recently a tug at my hair.

Cooper is feeling better. The past few days were rough on him for some reason. He felt a little warm and on Tuesday night he was unconsoliable for a couple of hours. Still no teeth though. He seems to have blown through this period and is feeling better now. He has also developed the habit of sleeping on his tummy with his little butt up in the air lately. I've even seen him raise his trunk with his arms...meaning crawling can't be too far behind....and then the real trouble starts.

Last June we thought Jack was going to be the little protagonist, as his kicking was part of the reason the two boys entered the world two months early. He was also almost twice the birth weight of Cooper, the little food hog. A lot has happened since then and I think the boys have flipped in propensity to start trouble. This could flip again I know, but for now, I think it's Cooper we have to keep an eye on. (I say this tongue-in-cheek, as Coop is just a great kid, so sweet and fun to be around. And any mischief that is inside him, is probably just part of being a big boy!)

That's about it, getting ready to go to DC for a week on the 17th (the 6 Month Anniversity of the Transplant!) and I'm sure going to miss those boys. Robin's going to have both boys all day then, she'll be entitled to a little pampering after that.

TTFN

Tuesday, April 5, 2005 2:24 PM CDT

82 Days Until First Birthday!

From Dad

Another "cloud" has been removed from Jack's personality over the past few days. I don't know what, when or how, but all of a sudden he is acting more and more like a nine month old baby. For instanct, he didn't cry AT ALL during his OT session yesterday, he kicks and kicks and kicks, just like his brother and his eyes are quick and alert. It's just great to see this and pray this is just the beginning of a long stretch of nothing but good for Jack. He deserves it.

Cooper is feeling a little under the weather. Again, we think it has something to do with his teeth, but nothing has popped through yet. He continues to progress and mature. He is rolling around and insists on sleeping on his stomach. The thing with his sleeping position is that his head is always cocked way back as if he's in some type of disco dance. I always want to reach down and move his head to a more comfortable position, but he resists and threatens to wake up, so I give up.

Spring is pretty much here and we're loving it. Time to get out and enjoy the weather and introduce the boys to the great outdoors. Also, with a heavy heart, we are currently in the process of building a new house. We have decided to move closer to my work to cut back on the commute (usually an hour or more each way) and to be a little closer to the U of M . . . just in case. We will be leaving our current neighborhood after five great years and many wonderful relationships. We will miss everyone there and thank you for your love, support and just for being great neighbors. We still have several months before the house is complete, so we have the summer here yet though.

One last thought for the day, even though I'm a Gopher fan and alum, way to go to the Illini. Robin is from Champaign, so seeing a hometown team do so well in the season and Big Dance was a lot of fun. There's always next year!

TTFN

Sunday, April 3, 2005 8:41 AM CDT

84 Days Until First Birthday!

From Dad

The boys are doing good, having a pretty good weekend.

Cooper is rolling around and starting to figure out what it takes to move on his own. In the past he figured all he had to do was scream loud enough and someone would move him. However, that is pretty inefficient, according to the Coop's thinking, because sometimes those adults don't move fast enough and sometimes they place you somewhere you'd rather not be (e.g. bed). It's probably a matter of weeks now until the mini Coop really does start to motor around. He still doesn't like to sit up yet, although he can. It's just too much work. Also, weighting in at almost 21 pounds, makes it streneous holding up all that weight. Coop's gainig weight, but he is by no means fat. He is skinny (not really, he's actually solid as a rock), so he has to be growing longer!

Jack continues to make strides in his development. He keeps his hands together and is starting to grasp things. His eyes appear to be better to us (e.g. not the lazy eye thing anymore), although we have not been as diligent as the Doc wanted us to with patching an eye every day. I actually went out and bought him a "pirate's patch" to put over an eye. However, whenever we put it on him he screams and crys like nothing. So we take it off of him, over fear he'll start to hyperventilate.

Jack's overall development is going good. He is having trouble with his food and we're starting to wonder if it's lactose intolerance. That would explain alot, or maybe it's just the drugs that we put into his stomach that causes all the problems. Whatever, Jack sometimes has a real hard time accepting all the food he's stuppose to take.

We ended up getting Jack's his own "butterfly" mat the other day. Last week Cooper became a "butterfly bully" but not sharing with Jack. Coop would reach over and pull Jack's hair. So we went out and got Jack his own now. Coop and Jack play side by side now in relative harmony. However, not as I'm typing this, Jack and Cooper are having a tug-of-war with a stuffed tiger. I see Jack actually won this one.

Cooper is still that spitfire we've known since the days of the incubator back at Children's Hospital. He's still our mini-cooper. Jack has earned a few more nick names -- Jackers and Jackaroni as the latest.

Things are going good here. We are frequently tired trying to keep up with these two, but it's worth it.

TTFN

Friday, April 1, 2005 3:50 PM CST

86 Days Until First Birthday!

From Dad


It appears as if we may lose our earthly Great Shepard soon. God will bless him and Heaven will be that much richer with him.

Pope John Paul II, Cooper, Jack, Robin and I pray for you.

TTFN

Thursday, March 31, 2005 7:37 AM CST

87 Days Until First Birthday!

From Dad

New Photos - posted Tuesday PM

A couple of good days behind us...Jack continues to make strides in his physical and mental development. He's catching up, albeit slowly, but I think the developmental gap between the boys is slightly narrower than it was last month. Jack's been having trouble keeping weight on, primarily because of the amount of diuretics he's on, but I think we may have that licked also. Just by feeling the bumps on his head, I can tell that it's a lot smoother and that means he's starting to get back to positive weight gain.

Cooper is starting to sleep on his stomach now. He has hated to be on his tummy for such a long time, but now whenever I go in there to check on him, he's sleeping away on his tummy. This scares the heck out of me because I'm always looking to make sure he's still breathing. I don't know if I'll ever be able to rest peacefully again after all the stuff we've been through with Jack.

Mommy is doing fine and actually had both of her babies in bed with her the other day. Both were kicking, cooing and laughing as she was trying to catch a little extra sleep. I don't think it worked.

I'm heading off for Active Duty for a week in a few weeks. This is part of my two week obligation with the Army every year. I'll be in Washington DC for a week, and while this is just a one-week trip, it invokes anxiety because I'll be away from the kids for the first time. Part of me is looking forward to being able to sleep, but I think I'll probably get less sleep just worrying about those boys. I've got a little routine down with them at night when I get home from work, and I'll miss that.

TTFN

Tuesday, March 29, 2005 7:25 AM CST

89 Days Until First Birthday!

From Dad

****New Photos****

Jack and Cooper are really starting to act more and more alike. Cooper has had the habit of waking up around 3 a.m. and starting to play in his crib. He talks and plays with little blocks and has a good ol time. This lasts a while but soon he gets bored and thinks, where the heck are my parents, I want to get out. So if you're a 9 month old and thinking of this, what do you do? You cry and scream, and soon Mom and Dad come and get you. Cooper oftens ends up in our bed where he quickly falls asleep in a perpendicular position to us, establishing who really rules the "Coop".

Jack last night figured out the same thing. During the day Jack will spend hours just watching every move his brother does. Then he'll try to imitate him and think he's big stuff when he gets it done right. Last night around midnight he starts to fuss and moan. I go in there and try to calm him down, but to no avail. Jack ends up in our bed in between us. We soon discover that Jack has gas problems and for some reason our bedroom seems to remedy this . . . the joys of parenthood. Anyway, Jack quickly falls asleep, probably the most peaceful and restful sleep he's had since he's been home. It was wonderful. As a matter of fact, he missed his TV time with me at 5 a.m. and slept right through it. (He gets up with me when I get ready for work and watches "puppies" on the Animal Planet.)

It's great to have both boys acting like boys. Jack has made such strides since the incident earlier this month. We think he is still buring off the residue methadone in his body, the docs said this could take a few months, but all in all he is doing a great job.

We have several goals to work on during the next few months, mostly to get Jack to eat (from a bottle, sippy cup or spoon) and get ride of the G tube. Also, we have to make sure his eyes are coordinated (he wears a patch a couple hours a day, alternating eyes ... which of course he loves), and just general physical therapy to strengthen and develop his muscles. In many ways we're still at the beginning of Jack's recovery, but he's made great progress so far.

TTFN

Sunday, March 27, 2005 8:31 PM CST

91 Days Until First Birthday

**More Easter pictures**

From Dad

Happy Easter!

Well we did it, all five of us made it to mass today. We made a point of tracking down Father Steve to come over and check out Jack. Father Steve last saw Jack when he was baptised back at Children's Hospital in July. Jack was just over four pounds, in a coma, ventilator and had more tubes than you can imagine coming in and out of his body. Cooper had just confirmed that enternal and mysterious bond between twins by putting his little paw on Jack's heart during the ceremony. Anyway, Father Steve couldn't believe it, how big and strong Jack looked. Unfortunately he was sleeping, otherwise Jack could have shown off his award winning smile.

The boys went to church with those rabbit ears their mommy got them on. They attracted alot of attention, and even though they had pink in them (and as a red blooded American man, I'm obliged to try to keep that color away from my boys) they did look cute. I would look in the rear view mirror as I was driving and all I could see were these four little rabbit ears moving back and forth.

The boys slept through the entire mass! Then they were quiet and wide eyed alert when we went out to eat at Buca's afterwards. It was actually fun.

We went driving around afterwards and finally got home early in the evening. The two little Corbo Bunnies were full of energy though, having slept most of the day. They played, eat and had a good time. Until...Cooper Rabbit decided to pull Jack Rabbit's hair while playing on the Butterfly. Jack Rabbit started to cry a bloody storm up and his parents came a runnin'. Cooper just kinda looked liked "what's the matter, I didn't do anything" and let out one of his woody woodpecker laughs and smiled. He was instantly forgiven and I have a feeling that this was the first volley of sibling rivalry.

It was a great day.

TTFN

Saturday, March 26, 2005 5:14 PM CST

92 Days Until First Birthday!

From Dad

**********See the Easter Pictures**********


Holy Saturday and things are fine around the Corbo house.

Jack's clinic appointment yesterday was pretty good, his heart is getting better for the most part, there is still one part of the beat that is not fully recovered yet (the dystolic (sp?)m, which is the resting part of the heart beat). Apparently this cannot be adequately measured through an Echo, so we are not certain if there has been any or how much recovery from the episode three weeks ago, but we know it's not back to baseline yet. The remedy is to watch, increase his blood pressure medicine and pray. This is a ways down the road, but if it does not come back AND continues to cause incidents or other sparks of trouble, Jack may have to have a pacemaker.

We have this in the back of our mind, but one, he could not need it by just recovering on his own; two, by getting stronger he could out grow this and his heart will get stronger with nutrition and healing time; three, if he does need it, it possibily could be temporary in nature anyway (couple of years until his heart is strong enough on its own). We're in the wait and see mode now, so that's what we'll do.

Today marks the 77th day since he was released from the Hospital and spend his first day home. An interesting date becasue this is how long he spent doing the workup to get on the List (5 days) and then the time on the List (72 days).

Clinically though, Jack is doing great. He is not gaining wait like we'd like to, but that probably has more to do with the feeding schedule we have him on then anything. After some adjustments based on conversations with the Speech Therapist and the Cardiologist yesterday, we think we're on the road to weight gain again.

Speaking of the Speech Therapist, we brought Jack in to see him expecting a bad report card because Jack hasn't taken from the bottle since mid February. Wrong, Jack sucked down two ounces for the Therapist, was giggling, laughing, cooing, holding his head up and just doing everthing he shoud be. He showed us who was boss.

Besides that there weren't many changes to anything. We went down on some of the diretics ever so slightly and up on some of the anti-rejection drugs a little. The Count is now 10 drugs, 22 adminstrations a day. It's managable and only going to get better.

Cooper and Jack were the hit of the clinic yesterday, strolling through the place in their side-by-side stroller with their Easter bunny rabbit ears on. It was a cute sight and they got plenty of comments.

Cooper loved all the attention and kept hamming it up for anyone looking. He is really getting to be a big boy lately, rolling over and sitting up (with just a little help). Today, I was exhausted and was laying on the couch shutting my eyes. I had the boys in their bouncy seats at my feat watching their favorite - Baby Einstein.

I was just about ready to drift off to sleep when I feel this iron grasp on my toes. Here's Coop reaching up over his head, while sitting in his seat, grabbing my toes and yelling at me... "Dad, get me out of here, I'm bored".

It's great.

TTFN

Friday, March 25, 2005 8:29 AM CST

93 Days Until First Birthday!

From Dad


*********NEW EASTER PHOTOS***************


It's a Great Good Friday!

My two boys are home, growing and smiling. Mommy is exhausted, but loves her little boys very much!

Jack has an appointment at the clinic today; we pray that things show continued signs of improvement and healing. We expect good news today, just as this is the weekend of Good News!

There are many reasons to be thankful on this holiest of weekends; as there are many serendipitious threads in our personal lives and the heart beat of this nation and world today. The events of the last year have taught me many lessons, none more so than that life is precious, a Gift from God and we should cherish it just for the sake of it.

I feel the need to express my opinions on recent events shaping our society. However, this is not the forum to do it in. I cannot help but feel myself pulled into issues like that drama unfolding in Florida or new euthanasia laws in effect in the Netherlands. Suffice it to say though that what I have witnessed with my own eyes; the wonders and horrors of modern medical science, the miracle of faith and prayer and the magicial bond between parent and child have galvanized my faith, belief and views on many of today's social issues. Our ailing leader, the Pope, will probably depart this world soon, but he has steadfastly stood for some of the basic of all human values, namely Life! His stance has been against the iron force of atheism in his Communist homeland of Poland and recently against the equally vile trends towards secularism in modern western democratic societies. His is an example to follow, and I am a devote follower in his call for a Culture of Life to replace the current Culture of Death.

This weekend we celebrate the Resurrection of our Lord and His gift of Salvation for all. My family feels this grace every moment we look into our children's eyes.

TTFN

Wednesday, March 23, 2005 8:54 PM CST

95 Days Until First Birthday

**New Easter photos**

From Dad

Cooper, the name conjours up images of a ball player or just a cool kid to be around. I think Cooper's personality is definitely going to fit his name. I don't know how to explain it better, I don't even remember where we got that name, but he fits it perfectly.

Coop is a very happy little boy, who is constantly on the move and constantly smiling. His latest development (still waiting on those damn teeth) is to moan until you hold him up standing on his legs. Then he bounces up and down for what seems like hours on end. Up, down, up, down goes this little red mohawk'ed kid, each time the mouth curles up in a little mischievous grin and more and more droll comes out.

It looks like he's built lean and solid, has the "Hicks" eye shape, light blue, almost gray eye color and for some reason he always gets the comment "oh his lips are just so beautiful" -- whatever that means???

Cooper, Jack, Mommy and Grandma went on a "field trip" today to the Mall of America. This was a spur of the moment thing as everyone was getting a little stir crazy being "coop'ed" up in the house all winter long. They went there during the day, on a weekday, hoping that there would be small crowds and it'd be easy to walk around and the danger of germs would be de minimus. Wrong - this week is spring break for every school this side of Canada I guess, the place was packed to the brim. However, it was still good to get out and walk around. . . almost feeling as if you're normal again. The boys loved it and it actually tired them out as they took a nap this afternoon.

Jack is doing just fine. He continues to make strides in his development. He is moving his limbs in more of a coordinated fashion, albeit not strong like Coop's, but coordinated and really just for the heck of it. He has clear eyes and is starting to "talk" more and more. We've noticed a little bit of the shakes come back in his feet, we think this is the residual methadone burning off in his body. (He's been clean for 5 days now!)

There is one thing that Jack does that would make Gene Simmons stand up and take notice. Jack has this amazing talent to control his little tongue. I know this is a little strange, but it's amazing and kinda funny. Since he spent bascially the first six months of his life with a tube stuck down his throat and his mouth taped shut like a fish, he never had the chance to learn how to use his tongue to eat or make noises like most kids. As a matter of fact, he's just learing those skills now. Anyway, during this time he learned how to turn his tongue on it's side, upside down and any other way you can imagine. We would be watching him in the Hospital and we would see this little tongue come darting out of the little hole in the tape around that damn tube. Well, now he sticks it out in all these strange manners and often has it hanging like Michael Jordan going in for a dunk. It's really quite funny.

We'll that's about it. We prepare for the first Holy Week as a family and MAY even bring the kids to church with us on Easter Sunday. We're turning into one of those C&E Catholics, it's time to start getting back into the normal swing of things and get the kids on board in going to church. The church we go to has a "restless angels" room, so we may end up sitting in there, but it's better than sitting at home.

TTFN

Monday, March 21, 2005 12:21 AM CST

97 Days Until 1st Birthday!

From Dad


The boys had a good weekend, busy playing, eating, going through diapers and on occasion - sleeping.

Cooper has learned a new trick, which he thinks is the most hilarious thing on the planet, to shake his head back and forth in response to everything you ask him. He laughs and keeps shaking until he gets dizzy. Cooper also likes to dance and has learned that when someone holds you up, you can raise one leg and move around. Again, this is very funny according to Coop.

Jack, is learning new things also, like how to suck on wash cloths when taking a bath (Cooper has this down pat) and how to droll when your gums hurt. (Still no teeth on either boy, but the Pediatrician confirmed they are ready to poke through any moment.)

Both boys are doing fine. It's great, and we feel especially thankful as we head into this holy week. On August 1st of last year, the day after we found out about Jack's condition, we had the boys baptized. In those brief periods where I was coherent, I remember the priest praying for me, asking God to grant me peace, strength and understanding as I was going through the difficult time and the possible loss of a son similiar to what He did. I would never had thought of that analogy; one I think it's almost blasphemous to compare my situation to His (I'm glad a priest was saying this) and two, I was filled with grief but I had not lost hope. I believed in Jack, even though this little four pound baby was deep in a chemical induced coma and his heart was only working 9-10%, I still believed he could and would come through it.

Even though my situation was and is vastly different, I'm glad the priest said these things. The teaching and the sacrifice behind the Easter story has a much deeper meaning to me now. For God to give his son for our salvation is beyond description. It reflects the truest and deepest of loves, and now I understand why it is often described as The Passion. I wish this understanding could have been learned another way, but my faith and understanding of the love God has for us is so much deeper and stronger because of it.

TTFN

Saturday, March 19, 2005 6:05 AM CST

99 Days Until 1st Birthday!

From Dad

Yesterday was a visit to the pediatrician for the boys. We've been looking forward to this actually, just to see where they are on the charts and if they're catching up from their premie status.

Cooper is blowing away any signs of being a premie. He is ahead of 75% of his peers in length and 35% in weight. Tall and slender isn't such a bad way to go through life! The Doc was very pleased with his development and thinks he is just doing fine. He has "gone through the premie growth spurt" and is effectively caught up to his chronological age.

Cooper was rewarded for his progress with two immunization shots to his rather thick thighs. He didn't think that was fair or fun, but within minutes was back to kicking and laughing as only a Coop can do.

Jack, as expected, still has some ground to make up. He is barely on the charts for weight for his chronological age, so he is still very much a premie. His height isn't that far behind Cooper though (not sure of the %) so I suspect that Jack will soon go through a growth spurt and catch up. The doc said there is no reason not to be hopeful that Jack will catch up and be built and develop the same, physically, as Cooper. Also, the doc commented, considering the trauma Jack has experienced in his short life so far, he is remarkable in how far he is and shows little lingering effects (e.g. fear) about going through some of the developmental stages. Jack's development has probably been put on hold and is in a slow-go mode now. Watch out though, remember Jack was the "big brother" last June.

A pretty good report. We will continue to work with Jack to help him catch up. Cooper is thriving and is starting to get into that fun stage. He can't crawl yet, but he loves to stand on his feet and dance (with someone holding him of course). He rolls over, but hates to be on his stomach too long. I think the fun part is ahead of us.

Thank you God.

TTFN

Thursday, March 17, 2005 6:41 AM CST

101 Days Until Birthday No. #1!

From Dad

Things continue to be going pretty good for the boys. Jack is just making strides developmentally. He is really acting like a little boy now and not a Hospital baby. He is sucking his fingers, making sounds, moving limbs and loves to smile and laugh. You can just see the relief on his face. He absolutely loves his bath at night now. When we first brought him home in January he through a fit when we put his little body into water. Now he kick's back, puts both hands in back of his head and falls asleep. It's the perfect lounging position and a pre-requisite for manhood in America.

Cooper is growing hair on the side of his head now and slowly his mohawk is disappearing. Coop has two positions on the internal speed selector -- sleep and full throttle. It's so funny, at night I'll go in and check on him and Jack. He's sleeping away and the next thing I see are these two blue eyes looking at me. He smiles, lets out a little yelp and then starts kicking his feet making his whole crib shake. Then, I give him a bottle and he turns his head to the side and falls asleep.

Yesterday he was taking a little snooze in the afternoon and Robin gave him a bottle. Coop somehow got the bottle turned around and had the back of it stuck in his mouth. The only problem is he couldn't figure out how to get it out again. He was getting very scared and angry and by the time Mommy and Grandma found him, he was crying pretty hard. This scared the living tar out of us so Coop no longer gets to keep bottles in his crib when he's sleeping. Also, it's probably time to get away from those little bottles now and get to bigger ones. Coop can suck down those little 3 oz bottles in a couple of minutes. Back in the NICU he would exhaust himself getting 1 ounce down the tube.

That's about it, we're keeping an eagle eye on Jack, but everything seems to be going smooth right now. They are even sleeping better...knock on wood....

TTFN

Tuesday, March 15, 2005 9:23 AM CST

7th Day Home Again

From Dad

***********NEW PHOTOS**************

Let me apologize, I write something on the site yesterday afternoon and for some reason it never got posted to the journal. I'll try to recreate it here now...

I got a call about 3:30 yesterday afternoon from Robin. She had just finished seeing the Cardiologist and was calling me to tell me the results. I had been there (at the U) over the lunch period, as we were suppose to meet with the doc around 12:30, but the scheduling was all backed up and we had to wait and I had to get back to work. Anyway, by about 3:00 I didn't have many fingernails left (this was worse than the ninth and tenth inning of Game 7 in the 1991 World Series) and picked up the phone before it let out a tenth of a ring.

According to the Cardiologist, things are turing around in Jack's heart. The Echo showed significant improvement, not back to the baseline yet, but that will come with time. Jack is a little dehydrated, after losing more than 2 and 1/2 pounds of fluid, however that has really helped his heart function and his overall development as well. Her opinion now is that this whole episode was NOT a case of rejection, but rather an unexplained, hopefully isolated, "incident". We have to put this in the same category as his "heart attack", since that wasn't a "heart attack", but I have no idea what else to call it, and no one really knows what it was except it doesn't happen anymore and he's no worse for the wear.

Anyway, they dialed back slightly on the diuretics as we're going to take it very slow this time. They dialed up on some of the anti-rejection drugs, but that also may come down over time. We're in a wait and see mode right now as far as drugs are concerned. As of today he is on .05 ml 1X a day of methadone and will be completely off that crap by this weekend. After nearly three months of trying, we have finally beaten that beast! It may be some time before the residual in his body burns out, but he's not getting any more!

Jack's body was so dried out that they had a hard time sticking him for his blood draw. Also, they wanted an extra amount of blood this time to run tests. Okay - just think for two seconds about this and you'll get the picture -- you're 8 months old and been in the Hospital most of your life except the last several months. Now you have to go back and be held down as they shove a sharp metal object into your veins ... three times ... not a pleasant picture. It required two nurses, Mommy, Grandma and Cooper to hold Jack down and get the blood out. Robin said enough after the third stick! Jack was crying so hard that it caused Grandma to cry along. Seeing his brother in pain and his Grandma crying, Cooper had no choice but to join in the choir.

Cooper was great moral support the whole time along. Frequently doing little dances and yelps, causing Jack to smile. The boys were dressed alike in new outfits, causing stares and comments from passerby's. Cooper flashes his baby blues and gives profile shots of his red mohawk, causing women to gush. I think we're in trouble in a few years! Robin is already drawing up plans to beat back the girls (one of his cousin's has a similiar problem).

It was a great drive home. I felt as if 1000 pounds were removed from my shoulders as I'm sure Robin does also.

Jack continues to progress and is a generally happy baby now. We'll watch him even closer now to make sure there are no more "incidents" and that he keeps that fluid off. Hopefully though, we have some smooth seas ahead and can just work on Jack and Cooper's development.

TTFN

Saturday, March 12, 2005 8:02 PM CST

4th Day Back Home

**New photos**

From Dad

It's amazing to see how far Jack has progressed developmentally in the last few days. The only thing that tugs at us is the fact that he keeps losing weight from the diuretics. He is down close to 2 1/2 pounds now, just a shade over 14 pounds, since last Sunday, the night before he went into the Hospital. I think he needed to lose this weight, it seems to have plugged up his whole system. Similiar to immediately after he got the head shunt back in December, since shedding this fluid weight, he has just flourished. I can't quite explain it, but he is holding his up now, loves to sit in the high chair next to his brother, coo's and giggles, his eyes are crystal clear, alert and coordinated and he is moving and using his limbs and digits almost as well as Cooper. These are all huge improvements from last week.

It's amazing, if losing all that fluid weight was holding him back it's a little sad that we didn't realize that and push for it earlier. Although, it makes me wonder about myself, I wonder if I were to lose 15f my body mass if I would be more alert and intelluctually sharp. It's enough motivation to start to turn this all body back around and start to work out again.

Anyway, Jack is doing fine. One side effect is that he is on slightly higher dose of anti-rejection steroids and they have a side effect of insomonia. The last thing a baby needs. He gets so tired, but just can't find it in him to fall asleep. We end up holding him all day long trying to sooth him to sleep, but our only triumphs are short 15 - 20 minute naps.

Monday's Echo will confirm these results, we pray. We pray they don't show no - improvement in the heart functioning despite the clinical gains he has shown us the past few days.

Cooper is a great kid. He, Jack and I were alone in the house tonight. Just the boys as the girls were out with friends or running errands. I put Coop and Jack in high chairs right next to each other and fed Coop his dinner. He loves food and was an excellent example for Jack. Jack looked on and observed every minute detail as Coop munched away. I even gave Jack just enough of the turkey, and later the peaches, to put on his lips so he could taste it. He felt like such a big boy then, all grown up just like his brother. Us three boys had a great time and we were all laughing at times during this episode.

Coop leads by example and is helping his brother recover.

We're doing better today, praying for good results on Monday and loving being together AT HOME.

TTFN

Thursday, March 10, 2005 8:53 PM CST

2nd Day Back Home

From Dad

Jack had another wonderful night's sleep last night and from all accounts had a great day also. He's like a different kid now that he's back from the Hospital. He is moving and focusing his eyes, holding his head up more and making sounds. He doesn't cry unless he wants something and is starting to suck on things again. All in all he's acting like a baby, the way he should.

His weight is 14 pounds 9 ounces tonight, which compared to 16 pounds 7 ounces the night before we brought him to the Hospital (Sunday night) gives you a little idea of how much fluid he has expelled from his body. He looks smaller. The poor kid was trying to push all of this wasteful fluid around his body, no matter his heart was getting tired and he was starting to breath heavier. We hope this is a sign things are really going to start to turn around now.

C is for Cooper, that's good enough for me; C is for Cooper, that's good enough for me; Cooper, Cooper, Cooper starts with C. That's my favorite song now (to the tune of Cookie Monster) and everytime I sing it to Coopie he get's this big grin and starts to dance along. It's so funny seeing this red mohawk head dancing and just laughing at the sound of his name.

Coop is just doing great, still gaining weight and rolling and tossing around like there's no tomorrow. I'll be curious next week as he goes to the Pediatrician and we'll find out where he is on the charts. I have a feeling he's almost caught up with his chronological age.

We hope that the developments of the past few days will be confirmed and amplified by a good echo on Monday. This whole experience has caught me off guard, but to see the literal leaps in development and healing Jack has made in the past 72 hours almost makes you forget about the scary times a few days ago. I guess that's why next Monday is anticipated and feared at the same time.

TTFN

Wednesday, March 9, 2005 7:30 PM CST

1st Day Back Home

From Dad

Jack came home today at 6 p.m. He looks much better, having loss close to 10 ounces of water and fluid. His little buddha belly is no more and despite having received three days of massive steroids, he looks like he's thinner and ... actually healthier. His x-rays have shown steady and strong progress the last two days, however the heart still looks larger than it was before (on x-ray). We were told that it may take some time for the heart to return to it's proper size. Also, Jack's heart is from a child a little larger and older than he is (even now apparently) so it will be larger until Jack grows into it.

Jack actually slept 9 straight hours last night. I didn't know what to do with myself, I kept waking up every couple of hours to check on him, despite knowing he was hooked up to a million monitors and alarms. I kept going over to him and watching him sleep, very deeply and soundly, so deep that his heart beat and pulse oxy was getting pretty low. The only noise I heard was the sloshing in his diaper from all the urine he was expelling. Finally, around three o'clock I decided I had to change the diaper and take the chance of waking him up. The diaper was almost coming apart from water log. Jack did wake up, but quickly went back to sleep.

24 hours of perspective has brought me into a somewhat better mood and thoughts. Next week Jack will go and get an Echo and see how the heart function is doing. With God's help it'll start to show improvement, back towards the 81% he came from. For a little perspective though, if I remember right, back when we were waiting for a heart, his function was in the single digits at times.

Chances are, we were told today, he'll recover from this nicely and it'll be treated and thought of as an episode of rejection. Very common with transplanted organs, however I was hoping, after more than five months, the critical of all time, that Jack might catch a break and get through it with no episodes. I guess this episode caught me by surprise and brought all those emotions back. I don't know if that beast will ever leave my mind now, I'll just have to find a way to live with it.

Jack is an amazing kid though. He's strong and we think he's matured in these three days. He has a different cry, he seems more alert and acts more like a baby now and less like a narcotic hound. I think we finally kicked the methadone out, maybe these body flush is what he needed for that.

Jack knew he was going home. Mommy put new clothes on him, unhitched him from all the wires and was holding him. We then went to put him back on the cage they call a crib at the Hospital and he started to fuss. We picked him up and he smiled. We put him in the stroller and he smiled and giggled. He loved his car ride home and smiled ear to ear, that famous smile, the moment he saw Cooper.

We could tell Cooper was out of sorts and welcomed the return to normalcy...having his family around him again. He's a good kid and loves his brother. I bear hugged the little man and fed him and gave him a bath. It was good to do those things again.

We start again from here, but in a much better position as before this week started. We have gained knowledge and insight. Jack has loss that harmful fluid and Cooper knows he is deeply loved.

TTFN

Tuesday, March 8, 2005 5:37 PM CST

2nd Day back at the Hospital

From Dad

The biopsy was negative. No rejection right? we think so. The problem is they found abnormal and unlevel pressures in the different chambers of his heart. Meaning his heart never comes to a complete rest. This is supposedly a sign of a third type of rejection (not chronic or acute), even though there were no dead cells in the biopsy. This type of rejection, I've forgotten the name, is not well known and the treatment is the same as if there was rejection. Of course, they don't know if this is this type of rejection or if it's just an abnormality caused by the increase in fluid throughout his body. Hell, I don't even know if they've tested for a virus. Long term treatment is to make Jack's blood pressures low, allowing his heart to rest in between rests. If, IF!!!!!!!!!!!!!!!!, this is what they think it might be.

What the hell does this boil down to? Who the +$%* knows what it basically boils down to. Jack will stay here and undergo rejection treatment (three days of massive steroids) and will come home tomorrow. We'll watch his blood pressures and increase his blood pressure medicine until he become hypotensive. And then we'll watch and see what happens. He'll have an Echo in two weeks to see if there is any change.

It feels as if we're living back in limbo again. We were told again that an organ transplant isn't a cure, it's rather exchanging a fatal condition for a chronic one. I'd make the same decision again for my son, but for the Love of God why does he have to go through this? Why? What quality of life is in store for him? These and a million other questions and uncertainity abound in my own heart right now. A burning rage at the situation coupled with sadness for what Jack has to endure saddled with hope and fear for the future. I'm a mess, I can't even describe my emotions adequately.

Cooper came in today with Mommy and Jack IMMEDIATELY smiled when he saw him. They love each other!

I long for June 27th, a brand new father of two healthy boys, I was never prouder. I know now that it was merely a fantasy, but it was certainly fun to live it for a while. I'm trying not to be down, to keep up the faith, to be strong for Jack and Cooper, but this one is taking it's toll on me. I love that little boy so much it hurts and I'm coming apart at the seams.

TTFN

Monday, March 7, 2005 10:26 PM CST

59th Day Home (Actually, back at the Hospital)

**New pictures posted**

From Dad

We noticed Jack was having a little more difficult time breathing the past few days. At first it was something that occurred every now and then after he had a crying spat, but last night at about 3 a.m. we could tell it was something more. A tooth was popping out, maybe that was the cause of all this fussyness and heavy breathing, maybe the methadone wean, maybe he was catching a virus?

Finally about 5 a.m. I called the Transplant clinic again and told them I was bringing Jack in. We eventually decided to wait until 9 a.m. so we could just go to the clinic and see the Cardiologist directly. We got there, drew the standard blood tests and x-rays. Early indications were that it was either an increase of fluids in his body causing his lungs and heart to work harder, or an early stage of acute rejection. We then carted Jack up for an Echo and EEG and eventually a heart cath through the groin. We won't have final results back until tomorrow afternoon so we're living in limbo right now.

There are two possibilities, one being the increase in fluids has caused his heart to slow down to a 56fficiency factor (he was at 81ast time at the clinic and 'normal' is in the 70). Or, early stages of acute rejection. His heart appeared larger on the Echo and the EEG showed some abnormal rythems associated with either of the two possibilities. When the Cardiologist did the Cath she noticed different pressures in the different chambers of the heart, meaning, rejection is probably the cause of this episode.

What does this mean? Well, hard to tell, in the long run probably not a hell of a lot. We caught whatever it was early thanks to our obsessiveness in observing Jack's behavior. We'll bulk dump steroids into his system today and if necessary, if it's rejection, over the next two days to stop the rejection from getting any worse. We'll then adjust his med's accordingly to stop his body from attacking itself. If it's just extra fluids, we'll adjust his diretics up more and more until he starts to shed it. Then we'll back down on those drugs again, probably alot slower and more deliberate this time around.

Jack received not only doses of steroids today, but also sedatives, relaxing drugs and pain killers. His groin is cut in several spots to access the arteries there, so every time he wets a diaper he yelps out a scream from the acid. All the sedatives have really wiped him out and he is in a deep sleep right now. So deep we have to monitor him to make sure he doesn't forget to breath or beat his heart. He needs this sleep as he hasn't really rested in over a week now.

It was scary today for me. All the old emotions came charging back to me. I could lose my little boy was all I could think of. I tried to put a brave face on, but underneath it all I was tired, scared, angry and ready to bite someone's head off all at the same time. I felt sorry for Jack who has to go through this, it's not fair; and at the same time I felt so lucky because he has options and has a future that is still bright. If you spend enough time around a Hospital you realize not all patients have these futures.

A visit by Cooper tonight was the best medicine for both Jack and myself. That little red head with a mohawk (his hair only grows in the middle for some reason) was full of energy and giggle and restored some sense of balance in my life again. He'll never know the things he does by just being himself, may God always bless him because of that.

So here we are. I'm at the Hospital and Robin's getting ready to relieve me tomorrow morning, just like we did a while back. We await the results of the biopsy from the heart cath and see what comes next.

Say a little extra prayer for Jack tonight.

TTFN

Sunday, March 6, 2005 9:03 PM CST

58th Day Home!

From Dad

Quite the busy weekend with many, many things going on.

Jack's had his ups and downs, we had to call the transplant coordinator late last night to ask about his blood pressure. It was very high and he was not happy besides. After talking with her and her consulting with one of the Cardiologist, we were given the green light to go back to the old blood pressure medicine he was on prior to his last clinic visit. I think this will work out better, but it'll probably take a day or so to have it's full effect.

The methadone is down to .10 three times a day. We'll try it there, it's barely a squirt now.

Jack will probably be the first of the twins to actually have a tooth break through. Both have been fussy and Cooper drolls like there's no tomorrow, but nothing has happened so far. Tonight, Jack was just a fuss bucket and we had to give him some tylenol to calm down. After feeling around on his gums, we think we felt a tooth ready to poke it's ivory head out soon.

Cooper is doing great, he (and Jack) actually took in some fresh air today, enjoying the 60 degree weather. We took a stroll around the block and saw lots of neighbors. It was fun. Cooper just loved it and got to see all kinds of things he's never seen before. However, the trip and fresh air left him exhausted and he fell fast asleep tonight immediately after his bath. Jack didn't even make it out of the driveway before the fresh air was too much for him. He was fast asleep.

Some times we feel upset and angry for Jack because he has to suffer through all of this agony with his tummy and the drugs. It's just not fair. We see Coop just having fun and being a good little boy and Jack wants to so bad. You can see if painted all over his blue eyes that he wants to have fun just like Coopie. But something always stands in his way. Someday he'll break through and finally have the childhood he deserves. Cooper is a great roll model and a fantastic brother. We are so proud of him. Actually, we are so proud of both boys.

TTFN

Friday, March 4, 2005 12:16 AM CST

56th Day Home!

From Dad

Jack's wean has entered new grounds, we are now at .15 3X a day! He's having some symptoms of withdraw today, but not bad and only some, so we're not sure if it's really withdraw or not. We'll just hold steady at this level for a while and see where it takes us. The daily dose is now at .45 ml, we came home at 2.00 ml/ day; so we've come a long way baby.

Cooper is doing fine. He seems to have a great day, but poops out in the evening and starts acting as he's sick the past couple of days. He doesn't even splash around in his bath like he has in the past. Who knows, maybe he's playing so hard now a days that he's just plain tired.

Other than that, things are going good.

TTFN

Wednesday, March 2, 2005 7:25 AM CST

54th Day Home!

From Dad

***********NEW PICTURES, POSTED, BY MOM, ON MONDAY*********


Yesterday, Jack went to the U to be seen by a pediatric optometrist concerning one of his eyes. A few days after Jack had his seizure after the transplant, we started to notice that one of his eyes wasn't quite tracking with the other. We didn't know what to think of it, but felt that all the drugs that he was on was contributing to his inability to keep both eyes tracking together. His eyes got better over time and about the time he was released to come home, we hardly noticed it. As a matter of fact, after he had the shunt put in his head, we thought the whole thing was fixing itself because there was so much improvement in his eye movement afterwards.

Nevertheless, as part of the discharge orders the Dr's wanted Jack to be seen by an Optimitrist after a few months at home. The idea was that he would be stable and off most of his drugs. Well, he is stable and off most of his drugs, but not quite off the narcotic yet. Also, almost all of his drugs, including his anti-rejection steroids, have the side effect of dizziness. Okay? - cut the kid some slack is what we're thinking.

Mom and Grandma took the boys to the U for what they thought was going to be a quick office visit. Robin didn't want them to do anything to Jack, as he is just starting to relax and doesn't think people in white coats are always trying to get him. Still, they did do some tests on Jack, including putting those drops in your eyes that make them dilate, holding his eyelids open and a general examination. It wasn't as evasive as that ROP exam they threatened back in the NICU where they pop the eyeballs out of their sockets, but it was still a little traumatic for Jack. The saving grace was they tested Jack with looking at all kinds of different lights and movement. He loves that. We often find him in his crib looking up at the lights as if it's the coolest thing in the world. I get up in the morning and carry him downstairs with me while I'm getting ready for work, he watches the Animal Planet during that time and loves all the different lights and colors. Anyway, from what the Dr's could tell both of Jack's eye muscles are a little weak and cause his eyes to wonder a little bit. They think this will work itself out over time and with a little therapy, but optimism is something they don't teach at medical school, so we of course got all the possibilities. Jack may need glasses when he's two to three years old and if that doesn't help, he may need a corrective surgery to the muscles around his eyes.

Robin and I are both of the opinion; "yeah right, thanks, we'll take it from here doc". First, Jack needs to truly get off all of his drugs (except of course the anti rejection steroids) and just grow and recover a little more. For the love of mike, his surgery was only four and a half months ago! A lot of the crap he is on makes him dizzy, so give him a break. Also, all during his hospital stay he never had the opportunity to work on his eyes except looking straight up from his bed at the ceiling. Looking horizontal at moving objects in natural light is still a new experience to him. We'll of course do the therapy they suggested, but before the idea of glasses or surgery are even thought of again, we'll give him a chance to repair himself.

Cooper is the best behaved boy you can imagine. Through this whole thing yesterday he kept his brother company and very much enjoyed all the different lights and movement as well. The only problem is he refused to take a nap the whole day -- and you know what that means during the evening -- a holy terror!

In general though, he is doing great. He is rolling over fairly easily now and talking up a storm. He got some new clothes the other day and really looks like a big boy now -- at least he thinks so.

That's about it from here, hope all is well.

TTFN

Monday, February 28, 2005 3:30 PM CST

52nd Day Home!

**New pictures**

From Dad

Cooper is doing great, he's becoming more independant minded all the time and I think is ready for a leap in his development soon. Just intuition... One thing though, if he doesn't take his nap, watch out!

Jack's drop to .17 has been smooth, we'll go to .15 tomorrow and see how that goes. We're getting close. His stomach problems are periodic now, and we're hopeful that this is a sign that things are improving. During those times when Jack's tummy doesn't hurt, he's not going through the DT's from the methadone and all the other drugs aren't messing him up, he's a very happy baby! The more drugs we get rid of, the longer periods of happiness.

A thought occurred to me last night, I've probably talked more about Jack's drugs and its' consequental problems then Jack's heart! His new heart is doing just fine, and that's the best news available. He get's a cath done in April, which would be the six month mark. That will be a big test, but we're hopeful that things continue to go as they are -- smooth. Alot of the scars from the surgery don't even exist anymore. The scars from the other two surgeries are still there and the extended tummy is still there from the drugs, but the reason all this started, a bad ticker, is just fine so far. Praise the Lord!

TTFN

Saturday, February 26, 2005 4:21 PM CST

50th Day Home!

From Dad

Hard to believe it's been 50 days, coming up on the two month point.

Take a look at those pictures, you'll start to see why we have so much fun with Coop, he's a ham!

Jack is doing okay today, we dropped him down to .17 on the methadone and he seems to be handling it okay. We'll stay here just a couple of days then make the full step down to .15 probably on Tuesday if all goes right. I don't think it's physically possible to draw up less than .10 on the syringe, so we'll have to start working on the frequency soon, probably next week. It's quite possible that the next time we go to "clinic" at the end of March, Jack will be void of this crap! I can only imagine what that will bring.

Other than that Jack is starting to pull his hands and arms in towards the middle. A great stride. He is we'll into the 16 pound mark and is starting to kick his feet a little. We still have troubles with the elimination function, but it is better than before. I threw out the rest of that crap Portogen feeding formula that we had lying around the house, it's like the plague so I decided to destroy it. Jack actually made a little coo last night for his Mother, again a small step, but a very positive one. As we get these drugs out of his system he really starts to take off. I can only hope that when I close this journal, on their birthday, Jack will be down to just a few drugs a couple times a day and will be making huge strides to closing the development gap. All signs are positive long term, but the flight path seems to be a little slow (probably more of a function of his father's inability to be patient).

Cooper is doing great. He is developing and loves to be around people. He has developed the nasty habit of demanding to sleep with us. Nasty? not really, but let me tell you why there will come a day when he has to sleep in his own bed. Cooper loves the King Sized bed, not because he needs the room, but because he thinks he's a King. He sleeps diagonal in the bed, must have one limb touching his mother and another touching his father and drolls all over the place. Last night, I had to sleep like a stiff board over fear of rolling on top of his. He kept wiggling over and lying right up next to me. It was cute and actually I'll probably remember that warmly in 20 years, but I'm a little stiff right now. Coop also has developed this little woody-woodpecker laught, and likes to practice at it around 4 a.m. He's quite good, just ask him.

It's good to be home and with the boys. It's good to be able to complain about simply little baby things and not making life and death decisions on a daily basis anymore. Slowly...slowly, we are coming back to our senses. Someday we'll realize what we went through and we'll probably experience a break-down, we've heard this happens. I guess that's part of the healing process for us parents.

TTFN

Thursday, February 24, 2005 6:15 PM CST

48th Day Home!

*******NEW PICTURES!!!***********


Cooper loves Grapes!


From Dad

Cooper is definitely not feeling good, we can't figure it out. Before we thought it might be teeth, but nothing has come through yet. Another growth spurt? I guess it's possible, we just hope he isn't getting sick with something. He just isn't himself, he's very irritable, demands to be held all day long, cries sometimes for no reason at all, with big tears and generally is not his usual happy, go-lucky self. Poor, little guy, we'll keep a close eye on him.

Jack is doing okay. He seems to be tolerating the .20 fairly easily so far. We'll probably make another drop on Saturday, I'm not sure if it'll be into the teens or if we'll drop the frequency, it's open to debate right now. He is growing, reaching 16 pounds 2 ounces, his highest ever. It was strange, he went up to 16 pound 1 ounce, but then lost weight three days in a row to 15 pounds 9 ounces. In the past three he has gained it all back and then some. His weight gain was post clinic visit, and his weight loss was pre clinic, it's as if he knew he was going back to the Hospital and was scared.

We have completed the drug changes from the last clinic visit and are down to 25 administrations of 10 drugs. One of the changes was to his blood pressure drug. But, it isn't working, as his blood pressure has actually gotten worse and is too high now. I don't like it and don't understand the reason for the change, as his pressure before on the old drug was just fine.

Also, we have gone from 4x to 2x on the Lasix in 24 hours. And....Jack is peeing more... go figure. I don't know if it's related to the increase in blood pressure, but it's something to watch as well.

We're plugging away and look forward to the warm spring day that is coming up when both boys are feeling great, developing and growing and OUTSIDE!

TTFN

Tuesday, February 22, 2005 9:58 PM CST

46th Day Home!

**New pictures**

From Dad

The first full day at .20 and things seem to be going well. It's so strange, Robin and I were talking earlier that it seemed as if Jack turned a corner. He seems to be going #1 and #2 much easier and more on his own, less help is needed. Also, today he had a few sounds besides crying and seems to be on the verge of a coo and chirtle. Also, he is sucking on his hand and moving his head side to side, all great signs of further physical development.

But...

I came home tonight and find out he is having a hard time with #1 and #2. His physcial improvements seem to still be intack though. I guess it's a back and forth game for a while.

Coop is doing good. He's such a good brother, whenever you put the two together he is always touching Jack and kind of saying "it's okay, just do it like I do it". Also, when Jack cries Coop looks on and looks all concerned, trying to sooth his brother. I pray this is a foretaste of their life long relationship.

We are blessed, we know it. We complain from time to time and sometimes probably act irrational, but when the dust settles and we are half way towards sanity (e.g. at least two continious hours of sleep) we know the truly great blessings that are bestowed upon us. Thank you God.

TTFN

Monday, February 21, 2005 7:04 PM CST

45th Day Home

From Dad

A pretty successful trip to the clinic for Jack. Both brothers behaved very, very good for the trip; as their rewards Mommy and Grandma took them out to eat to a real restaurant. Cooper couldn't believe it, there was a world out there besides the three to four rooms he has grown use to. He gets excited to go downstairs sometimes, I can just imagine what he felt like being in a real restaurant.

The Cardiologist was very pleased with Jack's progress. He has appropriate weight gain, height gain, head circ growth and seems to be developing fine. He's behind, but that's to be expected. He'll close the gap gradually over time, I think the expectation of a rapid "catch up" are not in the current cards for Jack. Of course, the game could change once we get him off the methadone.

Jack had one drug discontinued, one changed and two cut back. He's currently on 11 drugs, administered 25 times a day. Progress!

We also decided to cut the methadone down to .20 starting tomorrow. A half step again, but I think he handles those better. If everything goes okay, we'll be in the teens this weekend. We're debating if we should make a drop into the teens, or try to go from 4x to 3x a day. We'll see how things go from here before we make that change.

The one thing Jack needs to start to work on is to start to "vocalize". He certainly knows how to cry and make noise that way, we'd all like to hear him start to coo and laugh the way Coop does. I know he wants to, every now and then a little giggle comes out of that little boy. It surprises him and us. Hopefully he keep that up along with other physical development milestones that he's working on (e.g. head control and sitting up).

Not a bad day, we'll take more like this. It's a whole month now before our next clinic visit, so he must be doing pretty good.

We're lucky parents, two beautiful boys!

TTFN

Sunday, February 20, 2005 5:15 PM CST

44th Day Home

From Dad

Day 2 at .22, things seem to be going okay, Jack is a little irritable, but that could be for a variety of reasons. We're hopeful that he does okay on this until Tuesday, then we'll try another drop to .20. We'll stay there until Friday or so, then try the big jump from 4x a day to 3x a day. Pray.

Other than that, Jack seems to be doing okay. He did not have a good night though...continued problems trying to digest and evacuate food. Tomorrow is a long awaited trip to "the clinic" and we're hopeful that this trip will yield more reductions in drugs and maybe an elimination of one or two.

Cooper is doing great. He looks outside for hours sometimes, yearning to go out there and play in the yard. Soon, Coop, soon!

Cooper is such a good baby, he is playing and just exploring everything now a days. He's a lot of fun to be around. Sometimes I feel guilty because either (1) I don't have time to play with him because I have to devote so much of my time to Jack and (2) because it's more fun to be around Cooper than Jack. I'm confident that as time goes by these feelings will even out in direct proportion to Jack's recovery. I never had much patience. I feel terrible having those feelings, it's got to be the fatigue.


TTFN

Saturday, February 19, 2005 7:50 AM CST

43rd Day Home!

From Dad

***********NEW PICTURES**************


Missed another day, sorry, it's been absoltuely nuts around here trying to get back to "normal".

We're still at .25 on the Meth, but I think today we're going to drop to .22. We'll do the half step again. Jack's been better the past couple of days and I think he can tolerate a short step down again. The only lingering problem is his constipation, the poor kid really has a hard time getting it out sometimes.

Other than that, he is growing and starting to develop physically and mentally along the same path his brother blazed. I know the Methodone has slowed this progress down because he has had to concentrate on other things. However, his head control is almost there, he is starting to grasp things and bring his hands and arms to the midline and he "cycles", albeit in slow motion, but similiar to his brother.

Cooper will cycle until he's out of breath, kicking both legs so hard, in an effort to show Jack how's it done. Jack will look on and smile. Cooper's a good brother, he shows Jack how to do a lot of thing. Jack in turn, is enthralled with his brother. He keeps an eye on Cooper whenever and wherever they are together. I said it before, I'll say it again, the best medicine for Jack is Cooper.

Friday's meeting with the Cardio team (a.k.a. "the clinic") was delayed until Monday. So, we'll find out how things are going then. We're hopeful that he'll get off another drug or two, receive good news from the Echo and Xrays and maybe decrease the amount of some other drugs. It's been over two weeks since a Dr has poked at Jack, a world record! We think Jack has been doing so well, besides for the Methodone wean, we're sending back some of the Corbo PICU equipment. Most of the oxygen, the pulse ox and some of the other smaller stuff is heading home. We're left with the blood pressure machine, a couple of bottle of oxygen in case Jack needs it if he gets sick, the food pump and 100's of syringes for the Drugs. The amount of drugs have been about halved since he got home, so even that is taken up less counter space. These are all great signs, it's that nasty wean that's holding things up still. We'll get there.

Thanks again.

TTFN


p.s. We like chiropractors too, as the boys' Godmother knows!

Thursday, February 17, 2005 5:42 AM CST

41st Day Home!

**New pictures**

From Dad

The last two nights I've slept in the nursery on the floor with Jack. It's seem to help, as he's slept most of the night with just a couple of bouts of crying. Those were related to constipation, which he seems to be suffering through as a result of the wean. Cooper is sleeping in our bed next to Mommy, and of course he loves it. He sleeps spread eagle, so he basically needs a king sized bed anyway (according to his thinking).

I think we're going to make it at .25. Jack seems to be getting better by exhibiting less of the symptoms he had earlier. He still has a few that are causing problems, but I think it's managable right now. We probably won't think about another drop to .22 until the weekend.

Cooper loves his baths, we jokingly threatened to not give him a bath if he didn't eat his spinach last night. He just looked at us deadpanned and ate his meal. Whenever I give him a bath the first thing he does is see how much water he can splash out of the tub. Then he reaches for the wash cloth and sucks all the water out. We end up having five or six wash clothses just to get him clean because he's always grabbing the one your using. He's so funny. He loves to just sit in the tube and splash and play.

TTFN

Tuesday, February 15, 2005 6:15 PM CST

39th Day Home!

From Dad

A tough day for Jack with the wean. There weren't any real hard core symptoms to deal with, rather just general irritability and insomonia. I don't think this baby has slept more than two hours in a row for several days now. This is an evil drug - Methodone.

Jack's constant grating cry kept Cooper awake most of the day and consequently he too is irritable. Cooper is the best baby in the world, but if he misses his nap watch out.

I can't believe that such minute amounts can cause such severe symptoms in Jack, but they do. I just don't know how much more of this we all can take. We're exhausted from lack of sleep and we're not even the one going through this. We feel sorry for Jack, the poor kid is in constant pain, but at the same time all we want him to do is stop crying and sleep. It's so tempting just to draw up a nice bump to quiet him down. We know though that that would only prolong this agony for everyone, and frankly, after hearing of a death associated with a methodone overdose on the radio today, is just plain dangerous.

Jack's clinic visit on Friday is being pushed to Monday due to scheduling conflicts.

I guess we're back to this one day at a time mentality. I thought we left that behind back in October. The battle is still at .25 four times a day.

TTFN

Monday, February 14, 2005 7:08 AM CST

38th Day Home!

From Dad

Jack didn't have a very good weekend. Or, I should more appropriately say, he didn't progress like he has been the past few weeks. Our jump from .30 to .25 on the methodone seems to have really put a clamp on things. We usually would have gone down to .28 instead of .25, but felt he was doing so well we could push it. To give you an idea of the difference between .25 and .28 of a ml, its a little over 1 drop from a standard eyedropper.

You wouldn't think a drop makes that big of a difference, but apparently it does. Here's the deal, Jack got to the U weighing about five and a half pounds and was 17 inches long. Over the next five months, despite a transplant and two other surgeries putting stress on his body, he managed to grow to about fourteen pounds and 24 inches long. This whole time he was sedated and given narcotics to either 'keep him calm' (e.g. don't stress out the heart) or 'for pain' after the various surgeries and procedures. At first these narcotics were potent ones (Fentanyl (sp?) and Versed(sp?)). Around the first part of December we successfully made the switch to Methodone and Ativan as replacement to the strong stuff and as a means to start the wean. Unfortunately, every gram Jack gained during this time his body put a slice of these narcotics away. There's probably a little bit of one of these narcotics in every cell in his body.

This is also one of the reasons why we use to get so upset and frustrated when nurses would tell us they gave him a 'bump' to keep him calm. While we understand the reason for this, Jack couldn't afford to get too upset with a heart that only works at 20% efficiency, it seems as sometimes these bumps were just excuses to keep him quiet. Regardless of the reason, we are paying for the bumps and the prolong reliance on this stuff now. I could say Jack is really the one paying, since he's the one in pain, but the symptoms of this withdrawel are so bad the whole family suffers along with him.

Now as we try to take this stuff away he often can handle the decrease in current narcotic intake by calling on those reserves in every cell in his body. However, occasionally those withdrawls from this bank account gets so much it starts to hurt. His body is saying, wait a minute your going into overdraft mode and I don't like it. That's why occasionally we won't see any signs of anything until serveral days have passed. I think that's where we are now.

The good news is that the symptoms now aren't as bad as they have been. We have irritability, loose diapers and constipation (I can't explain it), occassional hives and general restlessness. It's been much worse, with crying bouts that left cuts on his head from his fingernails, tremors, alternating hot and cold body temperatures, soupy diapers, continious sneezing, frequent yawning (where each yawn turns into a gag), massive hives and rashes and other complications. It has been enough to make us cry in frustration and sorrow for the pain he was in. We are no where near this now thank the Lord! Consequently, we're going to try to tough this drop out and hold at .25 until he's okay with it. I think we can do it.

.25 4x a day, is the halfway mark, since right before coming home he was at .50 4x a day. This wean not only causes Jack a variety of withdrawl symptoms, but just the fact that it's in his body has consequences too, namely in the motility of his digestive system. I think it also depresses some of his ability to physically and mentally mature as fast as he'd like to. So, we have to get this crap out of his body.

You know though, Jack will have a bout of one of these symptoms, cry for a while, then two minutes later stick that little tongue out and give you his trademark ear to ear smile. This smile is so big he has to close those massive blue eyes just to get it out...his eyelashes sometimes get caught up in his eyebrows when he does this. He's so damn cute.

It's hard, we feel terrible sometimes, not only are we so dog tired it's hard to operate, but you feel so bad to see Jack have to struggle for every rung on this ladder. You would think that after all he's been through, he deserves some smooth sailing. That's not in the cards yet, I guess.

Cooper continues to do so well. He is the best natured baby you could ever ask for. He loves to play and chirtle, and is really starting to use his hands to grasp things now. He has developed this strange fetish though, he likes to scratch things with his fingernails. He especially likes it if it's his Mommy or Daddy's face. He can dig those claws in and just scratch, then giggle. It's impossible to be mad at him when he flashes that toothless smile at you and tries to stick his toes in his mouth at the same time. Sometimes we'll be sitting and we'll hear this scratch, scratch, scratch . . . it's Cooper who's found a different type of material to touch and feel. No teeth yet, but I'd swear they'd be coming soon.

TTFN

Saturday, February 12, 2005 8:30 AM CST

36th Day Home!

From Dad

I missed a posting yesterday, just got carried away with getting the boys ready for bed and getting a little rest myself last night.

We have a little routine that is starting to emerge that is really helping out in the sleep department. After we eat supper and play with the boys a little bit, I bring one of them upstairs into the nursery (sometimes it's Robin, it just depends on what's going on that night). I give one of the boys a bath in an attempt to relax them. Jack screams bloody murder for about a minute, then is calm and starts to fall asleep when you scrub his head. Cooper just loves it, starts kicking and splashing water all around, this is narvana for him. We then bring them back into the nursery, dry them off, moisturize their skin and dress them. We bundle Jack up and turn his mobile on and it's light-out! He sleeps until the next morning except for crying every now and then due to dirty diapers or hunger (we drip feed him during the night). Cooper is a little harder to get to sleep. We follow the same pattern with him, but he fights it and then he you look the other way for a second and he falls asleep. He frequently requires a bottle to be stuck in his mouth when we put him in the crib, he sort of sucks on it passively all night long.

This little routine is starting to work. We frequently have 'hickups in the process and sometimes it doesn't last all night long. Also, frequently one of the twins will wake up in the middle of the night and scream. We try to get there in time so this screaming doesn't wake the other. Usually Jack can sleep through anything Cooper spills out, but Cooper is a little lighter sleeper. I guess all that time in the Hospital for Jack has taught him to sleep through anything. I have the same skill, from my time in the Army, but unfortunately I have not had the opportunity to practice it lately.

The methodone wean is going okay. We went down to .25 4x a day yesterday. This is exactly the half way point from when we brought him home. We're not sure how's it going so far, he's had a few runny diapers and appears to be a little agitated. Additionally, some hives have broken out this morning, all of these are signs of withdrawl. I don't know if it's serious enough to go back up a little or if we can wait it out. We'll see how the rest of the weekend goes.

Cooper is just a hoot, he's learning to do all kinds of things and is such a even keeled baby most of the time. He's fun to be around and considering he's closing in on the 19 pound mark, and he's not really fat, I think he's going to be a big kid. (He's grown close to a foot since he was born).

Jack had high praise from his Occupational Therapist yesterday. He's so close to being able to hold his head up by himself. He's starting to close his arms into the midpoint and with the assistance of the boppy and bumbo, can sit up and see the world. The OT commented that he is "very smart" as he learns things not only in between sessions, but also during the session itself. Music to any parent's ears, especially ours after the scare with the head bleed immediately after the transplant.

I should mention that during therapy Cooper was brought into the room. Jack immediately flipped his head over and tracked his brother the whole time. He definitely likes his brother.


Both boys are often put in their chairs facing the window looking outside. Mommy often comments that there is a world outside of this house and someday they'll get to see it...oh please spring...come soon!

TTFN

Thursday, February 10, 2005 7:05 PM CST

34th Day Home!

From Dad

Another good day for both boys.

Cooper's schedule is a little off, with him refusing to take naps (unless he is being held, like I am doing right now and typing with one hand and holding him and a bottle in another). Also, last night he again refused to sleep in his crib in the nursery and ended up with us (yes,
I'm off the nursery floor and back in my bed listening to a monitor). I think the little guy is growing again and probably getting ready for teeth. He still is so much fun to be around with that infectious smile and laugh.

Jack is doing great and every day he gets a little stronger. He almost has control over his head and is starting to really kick. He can eat over 2 ounces of formula from the bottle, but in a trait he picked up from his parents, only does it when he wants to. The methodone wean at .30 is going good, we're going to drop it down to .25 tomorrow as the next step. I continue to think that as soon as he has that stuff out of his body we'll see increased physical improvements and leaps in his mental development.

That's about it, we're getting more sleep and getting use to getting by on less, so I guess net net we're doing better also. We have clinic next Friday, the day before my birthday, and hope to get rid of more drugs and really surprise the Cardiologist with how much Jack has grown and improved.

TTFN

Wednesday, February 9, 2005 5:10 PM CST

33rd Day Home!

From Dad

Jack had a great night last night, only waking up once and crying. He is doing so good lately. Unfortunately Cooper decided to have a bad night and eventually had to be handed off to sleep in the big people's bed with Mommy around 4 a.m. Daddy and Jack continued the boy's night out in the nursery and had a good time. Tonight we're going to try both boys in the nursery again, but Daddy is going to be in his bed listening to the monitor. This is a big step.

Jack had a great day, getting high praise for his development in his first month home from his Occupational Therapist. He still has a ways to go, but at this rate he'll be caught up in no time. Jack also crossed the 15 pound threshold today, meaning he has gained about a pound and a half since coming home. If you remember most of that time was when he was being fed that sludge; this is an outstanding accomplishment and he should continue to grow and close the gap with Coop.

The only trouble with that though is that Coop is just growing like a weed. He is well in the eighteen pound category and has probably two inches on Jack. I think Robin said Coop was 27 1/2 inches long now. He just keeps growing and you can tell he's going to be a big kid. It's hard to believe this is the same baby who would not come out of his bubble in the ICC. Coop has his first tooth ready to pop out pretty soon . . . or at least that's what it looks like.

The first day of lent, Ash Wednesday, was an opportunity for a little reflection. Sitting in church this afternoon I started to remember some of the photos we were looking at yesterday. These were photos of Jack immediately after his transplant. It just doesn't seem real yet. Then it hit me, Jack would probably not be with us if it wasn't for a family somewhere making that decision to donate. That family will be going through Easter without their baby, and we'll have our first Easter with both boys only becasue of their gift. I think that's the real meaning of Easter. Thank you wherever you are, your gift is beyound description and must be divine in nature.

TTFN

Tuesday, February 8, 2005 8:31 PM CST

32nd Day Home!

From Dad

As we start Jack's second month at home things are looking better each day. Last night was great, Jack woke up only once with a little cry and slept all the way until 8:30 a.m. Also, he slept through both his midnight and 6 a.m. doses of methodone. I didn't wake up until 1:30 a.m. and then I gave it to him, with a similiar story for the 6 a.m. dose, however, Jack didn't seem to mind. It looks as if we're getting use to the .30 level - yahoo! We won't push things too fast, but probably later this week or on the weekend we'll try another small drop into the twenties.

Cooper however was a different story last night. He usually sleeps all the way through the night. However, last night was the second night in the crib in the nursery and I think he was a little off kilter. He awoke about 3 a.m. and wanted to cry, play, cry and then eat. After that, he was feeling good and went back to sleep.

The conclusion? - we're slowly growing into the nursery for both boys and the time they sleep through the night is getting longer and longer . . .could a normal night's sleep be far off? I can still hope, sometimes it's those dreams that keep you going.

Mommy enjoyed her day at the spa on her birthday. She was surprised when they told her she had an extra service coming, a pedicure, as a gift from her sons. Those boys are always thinking of their mother's feet (they got her those gift certificates to DSW for Christmas).

Grandma spend the afternoon alone with both boys while Mommy was at the spa and I was at work. A little apprehensive at first, but soon it turned into an exercise of joy as both boys were in good spirits and full of smiles. As a matter of fact, she said she liked it so much she won't mind doing it again - be careful what you say is the only advive I'd have to give.

Things are looking much better. Jack is recovering in many ways and Cooper keeps on thriving. We looked at photos of Jack immediately after the transplant. It's hard to believe it, it just doesn't seem real. I was talking to a friend from Chicago who went through a similiar situation with her second son as we did. Similiar in that he was born with major issues and not expected to make it. She turned to the Lord, became very involved in his medical care and suffered all the ups and downs just like we did. She was even told some of the injuries would be permenant and the most severe imaginable. Her four year old is getting ready for Kindergarden next year, and already starting to read and excels in other subjects. Prayer works.

It was interesting to talk to her. She said you never really let your guard down. Once you've seen someone banging on your child's chest you are never the same. She, like myself, cannot watch ER or other medical shows on television...we've lived those things and I have no desire to drudge up those memories unnecessarily. The animal instincts to protect your child come out and in hindsight, you get scared of yourself and the thoughts your mind can generate. We both had vivid dreams of hurting people and not feeling any remorse over it. Thank God it was just dreams and we never acted it out, but it is scary looking at it from this side now . . . scary in what you can think.

I guess it's probably time we start to think about healing ourselves as well.

TTFN

Monday, February 7, 2005 9:51 PM CST

31st Day Home! The first month!

***** CHECK OUT THE NEW PHOTO's******

From Dad

Keep your fingers crossed, here we are on day two at .30 and Jack had a "great" day according to Mommy and Grandma. Keep it up big boy and we'll be in the twenties on the weekend! Na Na Na Na, Na Na Na Na, Hey Hey Hey, Good bye Methodone!!!!

Jack did show some signs of withdraw yesterday and last night, but it seems to have gotten better. We have to be getting close to crossing this magical barrier.

The boys made it through the night in the nursery. I slept on the floor to quickly quell any disturbances and for my own sanity (can't quite cut the cord). A sudden bloody murder scream from Cooper about 11 p.m. last night should have woke the whole State up, but Jack kept sleeping. I think Cooper had a bad dream (we ran out of food) and after rocking him for a couple of minutes he was fast asleep and doing great. He awoke again about 4 a.m. with the biggest smile and wanted to play. He was smiling, giggling and kicking up a storm. I put him on the floor as I struggled to gain my wits. After a couple of minutes he was worn out and with the help of a little food he was fast asleep again. He didn't wake again until after I was on my way to work and Mommy had taken over the duties.

Jack also had a pretty good night. A couple of crying bouts, but for the most part he was snug as a bug in the rug all night long. He awoke about two minutes after Cooper fell asleep at the 4:30 mark. We tried to get back to sleep, but it was too close to me getting up anyway to get to work. So, I grabbed Jack and we went downstairs and I got ready. He watched with those large saucer blue eyes as I brushed my teeth and shaved. He couldn't quite figure it out, but thought it was funny as he gave me that big trademark smile. I brought him upstairs and tried to get him back to sleep, but soon had to resign to give him to Mommy as I had to beat feet to work.

Tomorrow is Mommy's birthday, what a great gift to have both boys at home and happy.

TTFN

Sunday, February 6, 2005 7:39 PM CST

30th Day Home!

**New pictures posted**

From Dad

Well, we didn't get a chance to try both boys in the nursery last night, Jack started to exhibit signs of withdraw and we decided to spare Cooper a restless night. It turned out to be a good decision, as Jack was up and down all night long, never sleeping more than 45 minutes in a row. Consequently, I had to crash for a few hours this morning after Mommy got up and took over the duties with Jack.

We're going to see if we can tough out this stage of the wean. He's on .30 every six hours now, and this is the exact spot where he fell apart a couple other times before. This does not seem to be as bad as the others, so maybe with a little patience and some good food this time around, he can get through this barrier. There can only be good things ahead once we get through it.

Seeing the hell Jack has to go through because of these narcotics makes you want to scream. He was on these things to keep him calm and not stress out his old heart while we were waiting. Because the wait was so long and he was so small, he became an addict. We couldn't start the wean until his recovery was well under way. We did move off the hard core narcotics fairly easily, but this Methodone will not go away. I tell you, if this is what a "cocaine baby" has to go through, I think those parents that do it to those helpless babies should be shot.

Cooper is just getting bigger and bigger all the time. He loves to play and is curious about everything. I took him downstairs with me today so I could watch him while I ran on the treadmill. I put him in the car seat and started to run, he started to laugh out loud; I tired not to take that personally because this is my second time back on the mill in over six months and it's obvious. Anyway, within five minutes Cooper was asleep and my self esteem was starting to be repaired.

That's about it today, pray we can break through this methodone barrier.

TTFN

Saturday, February 5, 2005 6:30 PM CST

29th Day Home!

From Dad

We're closing in on the first month at home, if you can believe that already. Four weeks ago today we brought the little guy home. Most of that time has been dedicated to getting him off as much drugs as possible and figuring out his feeding issues. We've made good progress there and hope the weeks ahead finish out that process and that we see big strides on the physical rehab part.

Jack had a good day today. We tried something different last night with Jack spending the night in his crib in the nursery...no alarms...no pulse ox...no oxygen...the cord is starting to be cut. It went pretty good, Jack had just minor incidents througout the night, again mostly associated with the elimination function. All in all though, a pretty good night. I spent the night on the floor next to his crib just in case he needed something. I actually got as much sleep as in our bedroom and thanks to the thick whole area rug in the nursery, it wasn't half bad sleep...I've slept in a lot worse places...

Coop was starting to act more like himself today. I think the past week or so he's gone through a growth spurt. He is an inch and half longer than Jack now and like I said yesterday, tips the scales at over 18 pounds. He's such a big boy, loves to play and scream and lately, skip his naps so he's nice and fussy when everyone else wants to go to sleep.

Tonight we'll try both boys in the nursery. I'll spend the night with them again and hopefully this will be the first step towards a more "normal" sleeping arrangement and pattern.

TTFN

Friday, February 4, 2005 6:55 PM CST

28th Day Home!

From Dad

Cooper had topped the charts, coming in at over 18 pounds! A trip to the Pediatrician today for both boys showed strong, solid growth for both. It is hard to believe, but our little mini-Cooper has blown by the 17 pounder range and is in his upper teens now. He is showing no signs of slowing down either, eating like there is a food shortage. He is still a little lathargic compared to his normal behavior, but I think it has more to do with his growth. I'm not sure how long he is, but he is probably a good inch to two longer than Jack, and Jack came in at 25 1/2 today. For a kid who is only five months old gestationally, I think we may have an inside linebacker in our family.

This was the first time the Pediatrician saw Jack and he was pleasantly surprised. It's obvious that Jack is behind his brother developmentally, but not by much. Considering all that Jack has gone through it's really amazing. The Pediatrician was pleased to see good muscle tone, normal optical and hearing development and general good health. "You have ever reason in the world to be optimistic that Jack will catch up with his brother and lead a long, healthy life. . . just be patient with him".

The patient part will be the hard part for us of course, we're not the best with that attribute.

After the trip to the Pediatrician, Mommy and Grandma had to hurry home to meet the nurse for a home visit. She gave both boys their monthly RSV shot. Jack took it like a trooper, saying, "Cooper, this is nothing, see what a big boy can do". Cooper said, "sure, you little pip squeak, I'm over fifeteen pounds so I have to get two shots and you only get one, we'll see who the big boy is when you get two also"...sibling rivalry. (Jack is currently 14 pounds 10 ounces.)

Jack continues to take more from the bottle and we're hopeful this continues to a point where in a month or so he won't need the pump anymore. At which time we can start about closing up the mic-key.

This weekend we'll take another baby step on the Methodone wean, down to .30 four times a day starting at midnight tonight. If this works, this will be the smallest dose Jack has been on (and stuck to). Pray it works, so many of our small issues will start to clear up once we get this crud out of his system.

TTFN

Thursday, February 3, 2005 5:50 AM CST

27th Day Home!

From Dad

Well the count is at 29 administrations and 12 drugs, this is the lowest point so far, matching where Jack was right before he had the two surgeries back in December. Considering one of these drugs is the narcotic, another is a vitamin, and one mouth swab, things aren't that bad. We anticipate that Jack will eventually be down to three to five drugs, each maybe two to three times a day, so we're pretty close to that. It might take us a few more months to get there, but we're moving in that direction. The next big steps are to complete the narcotic wean, of course, and then start the lasix wean (the last of the diuretics). The key to these two areas will be nutrition and growth.

Jack had a good day yesterday, definitely enjoying his new food and spent most of the day catching up on six months of missed sleep...kind of important for a baby.

As I mentioned before, now that drugs are starting to be brought under control, Jack is starting to emerge from this chemical fog and the hurdle in front of him now is physical rehab. He has made great progress since he's been at home...he now can drink from a bottle up to 2 ounces at a time (when he feels like it, sometimes he prefers just to lay back and let the mic-key do the work); he has developed more back and neck strength, not quite to being able to hold his head up, but getting there; he is up to 14 and 1/2 pounds, gaining two pounds since his release from the Hospital; when he is really excited he has started to emit low level coo's!; his legs, arms and hands are starting to be used and moved more, slowly reversing the effects of six months on your back. He is behind his brother, but probably not as much as you would think. Also, Robin and I have maintained this from the beginning, Jack is a very strong kid and we think once freed from the bounds of drugs will make leaps to catch up physically. His best form of therapy is playing with his brother.

Cooper isn't feeling the best. He was lathargic and generally just didn't feel or act himself yesterday. We think he has caught a bug of some sorts and/or is growing and needs to concentrate the energy elsewhere. He still loves to play in his high chair and churtle out to anyone who can hear though. He has a splotch of hair in the middle and right up front, and that's about it. It's so funny to see this little kid with that hair. I gelled it up the other day in a mohawk style and you could almost picture him on American Idol someday. His hair is turning more light red/ blonde everyday, definitely the Irish starting to stand out.

TTFN

Wednesday, February 2, 2005 6:53 AM CST

26th Day Home!

From Dad

**Some new pictures posted**


Yesterday's trip to the Clinic was good news for Jack. Both boys, according to Mommy, were on their best behavior and had smiles and laughs for everyone. Jack is feeling much, much better now that he doesn't have to eat that crap and is on a more normal diet. He's back to the regular Jack!

The Cardiologist dc'd a number of drugs yesterday, mostly the diuretics and the associated minerals needed to replenish the body because of the diuretics. I think it was a total of 4 drugs discontinued, with a couple more having their dosage reduced. I'll get the official count later today after Mommy gets the drug schedule squared away. Also, thanks to Robin's dilegence, Jack now gets Maalox before the big drug dumps during the day (8 a.m., 4 p.m. and midnight). We give it to him an hour before these times and it coats his stomach and prevents him from being getting an upset tummy when we put some of those drugs into him. Robin did the research and dogged down various Doctors to confirm and get orders for it. It's helped greatly and her baby is back to being a baby because of it.

The recent changes to Jack's diet have also meant that (1) he sleeps more, especially at night! and (2) the elimination function is working much better. We're not perfect yet, but it's much more comfortable for Jack and Robin and I are starting to think we're human again. We anticipate more decreases to drugs over the next few weeks. A;so, the slow, gradual, bio-feedback drug wean is going good so far (knock on wood). We're down to .32 on the Methodone, 4 times a day. Last time we were near this level Jack fell apart, but he appears strong as ever now. I would anticipate a few more baby steps down to .25 by the middle of next week. We'll then attempt to go to 3x a day and then further and further down! This will only helps things more when it's gone.

Now that we are starting to get the drugs and feeding down with Jack, and he's feeling much more comfortable being at home, it's time to really start to concentrate on his physical rehab. We've been working with the PT and OT and ST folks on various aspects over the past few months, but side issues (e.g. stomach, head shunts, feedings) have always seemed to set us back. I think Jack should be poised to make a big break through in the next month and start to close the gap with Cooper developmentally. With that said though, Jack is amazing in where he is considering where he has come from. He is strong and loves to be around his brother playing. He can't quite wrestle with him yet, and sometimes Coop bonks him and Jack can't respond, but that day is coming.

The hard part for Jack in closing the gap with his brother is that Cooper is making head way on his own. Some of the ICC nurses at Children's will remember this little Coop who had legs no thicker than pencils. They were literally just slightly fatter than my pointy finger. Well now, they have rolls of baby fat covering two locomotive pistons. This kid kicks the side of his crib and it moves! He stretches and grabs things and if you put him down in one position before long he'll be somewhere else if by magic. He doesn't have the power of independent locomotion yet, but it can't be too far off. Also, although we have arguments about this at home, I think teeth are going to be poking through pretty soon. Coop continues his hilarious demeanor and really is the best drug for his brother.

Robin and I are exhausted and have barely had any time to ourselves. We understood this going into parenthood, but didn't quite sign up for the ordeal we've just gone through. As I've said before, we've been in crisis mode for six months in a row and all of our emotions are worn raw. We prayed so hard for these kids, and then to have them and almost have Jack taken away was too much. Also, while Jack's future prospects are just as good's as Coop's or any other baby's, we will always be worried about rejection or other complications associated with the operation. We often stop and remember the Cartwheel Girl we met when Jack was first transferred to the U. She had a transplant seven years ago when she was Jack's age. Now she is a healthy, energetic seven year old who likes to do gymnastics. She'll grow up and reach the potential God originally set out for her, as will our Jack. We're probably just coming out of the crisis mode and trying to figure out what real life is all about now. I don't think we're ready to bring the boys out into the world yet, over fear of germs, but look forward to warmer weather and walks with them in the side by side stroller. Just having this conversation is a blessing compared to where we were four months ago. The gradual re-introduction to the real world is starting and we're eager, but still a little dazed.

TTFN

Monday, January 31, 2005 7:13 PM CST

24th Day Home

From Dad

Last night was much better, we actually got SOME sleep. It wasn't a perfect night and we are still tired, but there were stretches where we were actually in REM. Also, and more importantly, Jack got some much needed rest. This trend continued into the daylight hours today. Jack was alert, resting and very smiley all day long. He is moving his bowels a little easier today as well, so he is becoming a happy baby again. We hope and pray that this continues, it's only too bad that Jack had to prove his pain in order to get his formula changed.

Cooper has been very quiet all day long. He isn't the normal Chatty Kathy (Keith) that he normally is. He's either growing, has a little bug or is just getting use to eating more of the solid food. It's probably some combination. He doesn't seem to be very sick, just not his usual energetic little self.

Tomorrow the boys, Mommy and Grandma will go the the Clinic to see how Jack is doing. We hope that some of the drugs and dosages are scaled back. We know he doesn't need some of them now (e.g. the diuretics). Jack has gained over a pound since his last clinic visit (10 days ago), so it'll be interesting to see if anyone notices.

We hope that this trend continues as we continue to attempt to find a routine with the boys. You know what though, it's not that its not fun, because it is, it's just that we're so damn tired we get mad because we can't fully enjoy the two to the extent that we want to. Anyway, take care and talk to you tomorrow.

TTFN

Sunday, January 30, 2005 8:58 AM CST

23rd Day Home (Back Again)

From Dad

Jack is coming home . . . again!

Friday night (Saturday morning) brought intense pain to Jack as he tried to digest his food. About 1 a.m. he woke up and was inconsolable. He cried and kicked so hard that he scratched his head up pretty good. We finally got him settled down around 3 a.m., however, the rest of the night he had some minor fits. This was not unusual, he's been going through this all week. As a consequence, this child was exhausted from crying and the fact that he never got more than a few hours of sleep in a row or that much in total during a day (neither did his parents).

We knew this had to do with gas. Gas, gas, gas, it's all we've been talking about and trying to manage since that damn nissen and G tube surgery back before Christmas. Friday's episode was the last straw, so I called the Transplant Coordinator and she recommended that we bring him into the E.R. to get checked out. Two minutes later, after consulting with the in-service ped's Cardiologist, they suggested we just admit Jack for observation. So, at about 2 p.m. yesterday Jack was back on "the floor"! He was in his neighbor's room this time, as his neighbor is recovering from his recent heart transplant.

When we got there Jack was smiles, giggles and was loving life. Earlier, before we got him there, we decided on our own that this sludge that we feed him (portagen) had to go. We dc'd that crap on our own and started to feed him a high concentrate of Cooper's formula, Neosure. Jack was suppose to go on this on December 18th, but in the confusion of the holidays, multiple Resident roll overs and conservative medicine, the actual date was lost. Also, the ultimate reason for being on the sludge was lost as well. (That portagen sludge was for Jack like trying to such mashed potatoes through a straw in a lake of molasses. Also, it would instantly curdle when it hit the acid in his stomach. This would throw off more gas, and considering Jack only has one escape hatch for the gas, it caused him not discomfort, but out right pain!)

The Cardiologist checked Jack out and agreed with our decision. She actually wanted us to go down on the concentration a little more to 24 cal (from 27). We said that Jack has the capacity to make up for the loss of calories through increase in the dosage of food. Heck, Jack's been bagging for more food and has recently, on a routine basis, been gulping down 1 - 2 ounces on his own. At that rate he can almost sustain himself without the need for mechanical intervention by the mic-key. Close at least.

Anyway, we started the 24 cal Neosure and Jack had a pretty good day and night. Not perfect, but much better. He was never inconsolable anymore, but rather cried when wet, hungry or uncomfortable. Last time I heard that was what a baby is suppose to do. We think this will get better as we continue to d/c more drugs...which we'll be pushing for at every clinic visit.

Jack is going home today at 11 a.m.

Cooper was a little out of sorts yesterday as well, but we think that had more to do with him almost entirely on cereal and regular baby food now. Boy has he grown also. He is packing on the weight, getting longer and you can tell he is going to be a big, strong kid. He loves to chirtle (sp?) and coo all day long now as well, often so loud you can hear him several rooms away. You know though, he is the best baby, you can put him down and he'll play and do whatever and only fuss when there's a problem like a wet diaper or he's hungry. When he's tired, he's developed this little routine of turning his head quickly to the right and closing his eyes. We put him in his swing and within a matter of seconds he is sound asleep. Sometimes he needs the comfort of a bottle in his mouth to fall asleep, as for some unknown reason that bottle is always empty within a few minutes... even if he is fast asleep.

Anyway, that's where we are now. Both of us got some sleep last night, so we're a little better off. Hopefully this little experience and change in Jack's diet will enable him to be happier and all of us to get some much needed sleep.

TTFN

Friday, January 28, 2005 6:27 PM CST

21st Day Home!

From Dad

Jack didn't have that good of a day today, he's been acting as if he's been in pain for the past couple of days. This not only breaks our hearts to see, but also causes him (and us) to have absolutely no sleep. (I had to pull over on the way home again today, I found my car starting to serve into the shoulder, I shook out of my haze and felt the adrenaline push through my body as I realized what was going on. I then pulled over and closed my eyes for half an hour, it did a world of good...power naps!)

We think basically Jack has a perpetual tummy ache. His slow digestive track from the narcotic, the sludge we're forced to feed him, that flippin nissen that he had to have and our novice status on this mic-key are all contributing to uncontrolled gas problems with Jack. We've noticed that he does not "toot", except when he has a BM of course, so I figure those gas bubbles are stuck in his intestines until pushed out and probably causes him some pain. Also, the cocktail of drugs he is on is just about "cruel and unusual". It seems some of the drugs' side effects are constipation and others are diarrhea. Jack seems to have both if that's possible.

You know though, in between bouts of crying because of the pain he smiles. Indomitable!

We'll be pushing hard at clinic and with his pediatrician next week to get off some of these drugs. Also, his narcotic wean has been going okay so far. This is our 4th attempt at it and we are going very, very slowly...really only reducing the dosage based on bio-feedback. So far so good. I'm sure once we get that crud out of his system things will improve also.

Cooper is by far the best medicine for Jack. Mommy says they have a little routine in the morning where they get into their bouncy chairs and watch Dora the Explorer. Apparently they are both fascinated with the story line. Coop coo's and screams and talks the whole way through. Jack looks at Coop and tries to copy him. What a brother!

Hopefully we'll have a good weekend...maybe by next weekend we'll be down from 37 and 16.

TTFN

Thursday, January 27, 2005 4:56 PM CST

20th Day Home!

From Dad

Jack didn't have a restful night's sleep last night, and his voice was periodically intermingled with his brother's throughout the night. Again, while we can never really be sure because of all the different factors that are part of Jack's equation, the issues were centered around Jack's gas and feeding. The mic-key seems to be much more comfortable for him, it's the elimination part of the process that gives him fits from time to time. We were told to use a little Karo syrup by a Ped's surgeon and hopefully this will help things out.

Cooper's rest was interrupted last night so he has been up and down all day also. We've been wondering about him starting to cut teeth because the amount of droll that comes out of this kid. He is still so damn cute though.

Even though they are twins and look alike, lately we've been thinking they've been starting to look a little differently. I think Jack is picking up more of the Italian part of his ancestory and Coop is getting more of the Irish. Coop's hair is becoming more noticably red in color and his skin more fair than Jack's. Jack has dark hair and darker, more oliver color skin. Both however have the German blue eyes though.

Jack's physical therapy went well today, with noticable signs of improvement. The therapist stated that Jack seems more comfortable being at home and is starting to develop more strength and control over his muscles. His neck strength needs to be worked on, but even this has become stronger in the past couple of weeks. I think it's just a matter of time before him and Coop are wrestling on the ground together. Also, with the mic-key, we can now give Jack some tummy time without hurting him.

Well, that's about it, I had to pull over and take a power knap on the drive home today because I was so tired. I'll try to get tonight's chores done sooner so I can hit the rack, and get the boys to sleep, earlier.

TTFN

Wednesday, January 26, 2005 6:24 PM CST

19th Day Home!

From Dad

A few tweaks to the drug schedule today brings the number of administrations down to 37 and the number of different drugs down to 17. I would suspect that at our next clinic visit next Monday, this to fall some more.

Jack had a great day today. He (and consequently us) had a fairly good night's sleep last night. Jack continued this momentum into the daylight hours and slept, eat and generally recovered. It's as if you can see the stress slowly seep out of his face. I think he's starting to settle in to things around here, and the lessening of the drug schedule can't hurt either. If we could get him to sleep like Coop, we all would be on the road to 'normal' real soon.

Cooper was a little off today, not sure why though. He didn't have a temperature, but was generally fussy most of the day and was a little lethargic. We can't tell yet if he's trying to come down with something or not, but hopefully a good night's sleep (notice the theme) will do wonders for him as well.

Physical Therapy comes tomorrow and we're anxious to see what they think of Jack's progress over the past week. We think he's improved quite a bit, with better head control, using his legs and arms more, and generally just looking healthier. It'll be nice to have this confirmed tomorrow.

We're still trying to get use to the mic-key and how best to feed Jack with it. However, I think getting the G tube out of Jack may have improved things a touch. I think the G tube was irritating the inside of Jack's tummy and this was complicating things. Of course, the number of drugs and procedures Jack has endured makes any type of analysis of an issue complicated. This is one of the reasons we are so anxious to get rid of some of the drugs...to eliminate some of the variables and side effects.

That's about it for now, hope this makes sense, I'm pretty tired right now.

TTFN

Tuesday, January 25, 2005 4:45 PM CST

18th Day Home!

From Dad

I think I speak a little too soon sometimes; as soon as I wrote that Jack was having a great day yesterday things took a turn the other way. Not really sure why, but Jack was Mr. Crabbypants all night long and into the day. He kept Mommy and I up most of the night, and woke his brother a few times also. He continued to irritate his Mother during the day with a low pitched moan. It may have been in anticipation of today's procedure in removing the G tube and putting in the mic-key, but I'm not sure.

Apparently after much confusion this afternoon, Jack did have his G tube removed and a mic-key placed. The procedure went smooth and Jack didn't even cry, as reported by his Mother. Nuero-Surg also did a follow up check on Jack's head shunt and was happy...keep the course was their recommendation.

Cooper has had his world rocked the past few weeks and has struggled himself coming to grips with having another baby in the house. However, true to form, he loves to smile and play and as long as you keep food close by and play with him, he's a happy camper.

We hope Jack continues to settle in around here and ... we pray ... actually we pray alot about this ... that he copies his brother's habit of sleeping all night long. We know that the poor kid is on so many different drugs at so many different times that it's hard for him to be his usual happy self. This too, the drugs, will go away with time.

Mommy and Daddy, signing off tonight very tired, but hoping for improvement in the days and weeks ahead.

TTFN

Monday, January 24, 2005 7:00 PM CST

16th Day Home!

From Dad

I went back to work today, leaving early in the morning before Jack's big dose of med's at 8 a.m. I left Jack, Cooper and Mommy all sleeping in the room. Apparently, Jack slept so long that he was actually awakened by Coop's coo's (that's a first, usually Jack is the one waking every one up). Later, I was told, the boys took a snooze together for nearly four hours .... in a row! Jack was full of smiles and a very happy baby today. Cooper continued to be full of smiles, giggles and is really loving pears and bananas.

Mommy was thinking Daddy should have gone to work a couple of days ago.

All kidding aside, Jack is noticably getting more and more comfortable every day to his new environment. He is packing on two or so ounces a day for the past week of good, solid weight. You can notice that his skin is starting to heal, with all the scars, marks and other evidence of his stay in the hospital disappearing.

The drug schedule is still at a break-neck pace, but the other baby things seem to be falling into a routine. Praise the Lord, now maybe we can all start to relax and heal. That hasn't really happened for Robin and I yet, we're not quite on the "crisis" mode we were on for six months. We're not quite at the "normal" mode yet either, but it's somewhere in between. Some of the fear that was always nipping at our heals (associated with Jack's condition and his stay in the hospital) is starting to fade...albeit slowly, but still starting to fade.

Tomorrow, Jack will go back to the U to get his G tube removed and replaced with a mic-key. Hopefully, this will go off without much of a hitch and not as painful as some of the stories we've heard. Jack deserves a break! Neuro-Surg will also assess his head shunt, which seems to be working very well and as planned.

Tomorrow is the last day of Ativan, which is barely a drop now. Also, we'll attempt another small drop in the Methodone, hopefully, this one will go a little more smoothly than our previous attempts at a wean. We figure we're doing smaller drops, he's gaining weight, and some of his anxiousness is gone with the change in environment. Hopefully that's all the ingredients to a successful wean.

That's about it, we're lucky to have these problems.

TTFN

Sunday, January 23, 2005 6:09 PM CST

15th Day Home!

**New pictures posted**

From Dad

A pretty good day, as Jack and I spent most of the day downstairs watching science fiction and football. We loved it. Jack was having such a good time that he started to really drink from a bottle, a whole ounce! That's great progress.

The only bad thing about today is that I barely got to see Coop. He spent the whole day with Mommy running around the house getting things organized and clean.

The two boys played together for a while this morning, but after Jack stuck his finger up Cooper's nose, followed a few minutes later by Cooper's fist to Jack's nose, it was time to seperate the boys. I'm sure this is the first of many little tiff's to come.

Today's relative calmness around here allowed us the opportunity to read about some of the drugs Jack is on. After reading this, we are much more motivated to get him off of it. I think all the drugs have side effects of constipation, insomonia, tremors and nervousness. We see all of these in Jack, unfortunately for us, it's usually around 2 - 3 a.m. and last until 7 - 8 a.m. We got to get this kid off of these drugs!

On a positive note, Jack is gaining some good weight and actually started to grow a butt.

TTFN

Saturday, January 22, 2005 5:11 PM CST

14th Day Home!

From Dad

Two weeks, wow, we've come a long way baby!

Jack has settled into his home very nicely now and is getting more and more comfortable each day. We are also getting more comfortable in his cares and understanding how to to read Jack's behavior. We continue to work with him on his feedings, and today he vigorously took the bottle for about a minute. He probably gobbled down 10cc of juice, but that's like a Big Gulp to Jack, and it's progress to learning how to eat through the mouth again.

He is also starting to use his hands and feet more, as well as focus on the environment as he sometimes goes cross-eyed trying to focus over long distances. He has learned how to use his little whine to get whatever he wants whenever he wants also. I think alot of these developments can be traced directly to living with his brother.

We've been putting the boys together more often lately and it's so cute when they start to notice each other. They stare at each other and then smile, as if, "I know that person and he's a good guy". Cooper shows Jack how to use his hands, fingers, legs and toes and Jack is starting to mimic the same behavior. In addition, Jack tries so hard to copy Coop's cooing and laughing...you can just tell that he wants to talk like his brother. Again, this is just another testament to how great of a brother Cooper is throughout this whole saga.

Robin and I don't know how or why Jack's original heart became so sick. We've only been told a very short segment of the pathology report and have not had a chance to even ask for a copy yet. From what we've been told there doesn't seem to be any definitive answer as to why this all happened...just conjecture probably leading to the conclusion that this was all just random chance and Jack turned out to be the (un)lucky one. We don't know why God challenges us sometimes...however, and much more importantly, we do know He listens to prayers.

When this all started Robin and I turned to friends, family and strangers and asked for their prayers. We have simply been overwhelmed with the response . . . and at least in my mind, I know that prayer works! I think Jack's experience alone proves that thoroughly!

One of the groups that has been especially important to us, not only in their prayer support, but in everyday issues and tangible signs of encouragement, have been our neighbors. I would like to thank them personally for their support to my family through this whole experience. From putting signs up when Cooper came home to the latest campaign to bring us prepared meals is simply overwhelming. It rekindles and restores the belief and faith in a community. Their generosity has been unmatched in my life and I’d like to thank all of them personally.

We get ready for another night, hopefully one that will bring a little more sleep for us and much more re"Coop"eration for Jack.

TTFN

Friday, January 21, 2005 9:40 PM CST

13th Day Home!

From Dad

Have I ever told you that Cooper is the funniest person I've ever met? Probably, but that kid really is funny. He loves to make noises and has an indomitable sense of humor. He is always smiling, laughing and having fun. The only time this 6 month old little boy cries is when he's got a dirth diaper or isn't feeling very good. Otherwise, it's pretty much wall to wall laughs all day long.

Robin and I were talking today on the way back from the Clinic about Coop. I remember holding him when he was a day or so old and he was soooo tiny. He was about the size of a big pineapple. His little legs were just a little thicker than my fingers. Now it's so funny to hold him, because he has rolls of "muscle" on his legs and seems to grow right before your eyes. For starting out a shade under three pounds, he's done alright!

Jack's trip to the Clinic was a good one. The Echo and EKG showed a strong and only getting stronger heart. X-rays show lungs that are getting stronger and have thrown off all the fluid that were his nemesis for so long. His abdomen is back to it's original girth (before the G Tube surgery). Lab works show that he is retaining the appropriate levels of different chemicals and isn't in need of so much drug support. Finally, he's gaining weight and just looking more and more healthy every day.

As a result, while not able to discontinue any drugs, we were able to make a slew of changes by slowing backing off some of the doses of each drug during a day. I'm not sure, but I think we'll be under 35 administrations in a 24 hour period now. The only down side from today is his continued problems with the methodone wean...but, we'll get that soon.

One thing that I've failed to mention before, and has really been a challenge for Jack, is his dislike of wearing clothes. I guess laying around the hospital for the first six months wearing nothing but a diaper, plus his naturally higher body temperature, make him uninterested in clothes. If you know Robin, this is not a good thing, as she started to buy clothes for these two little guys a few minutes after we knew they were coming. We're slowly changing this behavior on Jack, but it's a little difficult...case in point, while driving home from the Clinic today (it took us almost 3 hours because of the snow storm to go 25 miles) Jack fussed and cried until we rolled the window down by his car seat. The cold air and snow blowing in was exactly what he wanted. Every time we closed the window he cried and generally put up a very persuasive argument. (Robin was sitting back there with Jack and she froze her butt off.)

Grandma is feeling better and has been released from her room into the general population. She has a few restrictions attached to her liberty, but for the most part is a productive member of the household again and is loving spending her alone time with Coop.

Thanks again. We're getting better at this and things are slowly settling into a "normal" routine. I'm exhausted, but loving it.

TTFN

Thursday, January 20, 2005 2:29 PM CST

12 Days Home!

From Dad

I'm sitting here typing with my son Cooper at the keyboards with me (now I have an excuse for my spelling). He is just progressing so fine and is just the best natured little boy I've ever known. He is having fun checking out the different aspects of the house and learnign to grab things. Coop's been a little out of sorts the past two weeks with his brother home, but I think is starting to adjust. They don't interact much, usually just staring at each other, except of course when one starts to cry the other screws their face up and starts to cry also. Cooper is drooling alot lately also, I'm sure it's not teeth yet, but I can't pick him up without a nice spit spot on my clothes.

Jack is settling into his house and I think as finally getting use to it. We continue the break-neck schedule of his medications, 43 administrations and 17 different drugs in a 24 hour stretch. Tomorrow is another trip to the clininc and the Cardiologist, so we're hoping it's another opportunity to cut back on some of this. The narcotic wean is going okay, the Ativan is about completely cut out. The Methodone is proving to be a tough nut to crack, we had to go back up a dose last night again after it was apparent Jack was having bad withdrawel symptoms. We just can't put him through more unnecessary pain after what he's been through in his life so far. We only went up one step this time and will try another step down later this weekend.

Jack's gas problem is getting better as well. The sludge we have to feed him causes alot of gas, and since he has this nissen the gas has only one way to go. So, consequently we have to vent him throught he G tube to relieve the pressure. Added to this is the methadone as mentioned above, this slows down the digestive system and thereby causes even more gas pressure to build. The poor kid was in considerable pain at times because he couldn't relieve himself as often as he needed to. We have been venting him more often and also all night long now. This has helped considerably and the girth of his belly is almost back to normal now. This issue, belly girth, has been something we've been fighting since Christmas Day, so it's nice to see some progress.

Grandma and Robin are feeling better, so things around here aren't quite as chaotic as there were a few days ago. I don't think they're 100% yet, but they are operational and mobile, which is good enough for most tasks around here.

One thing Jack has learned since he's been here, probably thanks to his brother, is that a little squeal or cry can cause Mom and Dad to come running. Jack uses this and his big eyes to great effect, especially when he just wants to be held. Oh well, it works and we've been waiting for those labors for a long, long time.

TTFN

Tuesday, January 18, 2005 5:30 PM CST

10th Day Home!

From Dad

I ran a marathon a year ago, and that was great training for this experience.

First, Jack is experiencing general pain associated with the gas from the sludge we have to feed him. It mostly appears at night when he's on a continious feeding schedule and can't get "vented" through his G tube. It always seems to happen about the second after we reach REM sleep and then a high pitched scream and general crying. I scurry over to Jack and try to sooth him and eventually he works the stuff through his system and this settles him down for a couple of hours. Then it occurs over and over again. The end result is Robin, Coop and myself get virtually no sleep during the night.

Next, Grandma has been stricken with a nasty virus. We're very fearful that it could effect the boys, especially Jack, so she's been banished to her room upstairs for the past five days. I'm sure she's getting bored to death by now. I slid a little TV through the door yesterday just so she could have something to look at.

Next, Robin may be coming down with the virus her Mom has. We've tried to limit her contact with the boys and allow her to rest as well.

Finally, this morning while trying to comfort Jack I brough him downstairs to put him in his swing. Unfortunately, I missed the bottom three steps on my way down. Jack didn't even know what happened as I held him high and safe as I fell. My back though is another story, it landed squarely on the last three steps and has been hurting me all day. I'll go in tomorrow to get it checked out.

After a call to the Transplant Coordinator this morning and some experimentation, we have a working plan on the gas situation with Jack. It seems to have helped so far, the big test will be at night.

Besides this issue though, Jack is really doing great. His blood pressures are down and in the normal range now, he is gaining "good" weight, his coloring is great, and he is starting to coo and explore his world with his little body. We're taking baby steps for sure, but it's progress with more to come.

Next week we should get rid of the G tube for the mic-key. That should make life a little more bearable for all of us. Also, hopefully more meds will be discontinued this Friday at "clinic". The narcotic wean is starting again, very slowly this time, we'll see how that goes. I have a feeling that if we can get him off of this stuff alot of things will naturally fall into place.

As for Coop, he's is doing great. He has graduated into a bigger bottle and proved he was more than ready for it by slurping down 8+ ounces for supper last night. He likes cereal, but likes pears and squash much, much more. He is growing like crazy, making all kinds of screams and noises and grabing things...locomotion is probably just weeks away at this pace.

Since Jack's been home we've put the twins together a few times. Always worried that Coop will grab Jack's G tube or punch him or something. This moring I put the two side by side and all they both could do was stare at each other. Jack watched every move Coop was doing, and later in the day you could see Jack trying to copy some of the sounds Cooper makes. Cooper didn't and doesn't quite what to make of his brother being home yet. He just stares at him, tries to grab him and then screams in delight. The two smile at each other as if there is an understanding between them. There was only one scratch from today's encounter, Jack got one of Coop's fingernails across his nose.

That's where we are right now. We're tired and stressed out trying to keep up with things with the boys while fighting a virus ourselves. Hopefully tonight will be a better one.

TTFN

Sunday, January 16, 2005 8:20 PM CST

8th Day Home!

From Dad

I sit here typing and Robin is in the living room playing with Coop, the two are laughing almost out of control. Jack is in the swing with a smile from ear to ear watching them. The past 16 hours, let alone the past 6 months, are all worth it hearing this.

TTFN

Saturday, January 15, 2005 6:37 PM CST

7th Day Home!

From Dad

The first week home, holy cow, I think it was more traumatic on us parents than Jack or Cooper. We're settling into a routine though and starting to get a handle on the drugs and the feedings.

I did the count this morning and it's actually 17 drugs and 43 administrations during a 24 hour period after Friday's changes. I bet by the time Easter rolls around we're down to 6-7 drugs and a dozen or so administrations, and that will go down a little further by the time birthday #1 rolls by. At least that's the plan.

Jack is doing great now and has adjusted to being at home. His withdrawl symptoms have abated and he has been nothing but smiles all day long. We're doing alot of the exercises the PT people told us to work on, so hopefully soon he'll start to close the gap with Coop. Jack loves that swing, it's hard to get him out of it. As a matter of fact, last night was the first night the whole family slept in the same room ever -- and that lasted for about 6 hours. But, around 5 a.m., Jack said enough, I need my swing and Daddy and Jack went downstairs and climbed into the swing. He was asleep in five minutes and I ended up on the love seat with my Army Poncho over me to keep warm.

Cooper continues to progress. I've been playing with him alot the past few days, that combined with more and more cereal in the diet and his brother being home, has Coop a little off center lately. He plays hard and tries to stay awake to keep playing and watching his brother, but he just can't. His eyes get red and heavy and eventually he just falls asleep. He tried to show Jack how to drink from a bottle today, hopefully Jack was paying attention.

Grandma is down with a pretty nasty cold/ flu. She's been staying upstairs all day to keep the germs away from the boys. Hopefully a day of rest will kick this thing in the butt.

Robin and I have been going 150% all day to keep up with the boys and get other normal chores done around here. It's so nice not having to go to the hospital though. Also, having both boys here is so great. A year ago at this time we were eagerly anticipating having children, now we have two swings in the living room eating batteries like no one's business and diapers overflowing the garbage. Thank you Lord!

TTFN

Friday, January 14, 2005 8:16 PM CST

6th Day Home!

From Dad

A successful visit to the "clinic"!

First though, I think I wrote too soon last night about the drug wean. One of the narcotics, Ativan, is down to a whiff and Jack is doing just fine without it. The other however, Methadone, has proven to be another matter. Last night Jack started to exhibit the classical signs of a wean going too fast. Soon, it was apparent that he was not going to be able to sustain the level we were at and would require us going back up. Oh well, we are going to get rid of one of the narcotics and we'll start again on this one, but at a slower more deliberate rate. We figured this kid has been through enough and to try to force more pain on him for a fast wean is cruel (as long as there are no long term health problems that is, which we don't think there will be).

Back to the "clinic"; Jack is looking good, an Echo showed his heart doing great. X-rays showed that his lungs are still somewhat "wet", so we'll continue to diuress him until they are cleared up. Believe me though, I held him while they drew blood from him today and there are no problems with that kid's lungs. We went down of the dosage on some of his meds and dc'd a few of the minerals which he no longer needs maintenance dosages on. Progress - I think this brings the drugs down to 17 and the administrations down to 40 in a 24 hour period.

Cooper was excellent the whole day through. He showed his brother how to take a car trip and look out the windows along the way, how to sleep in the car and how to get every female you come across to fall in love with you with a quick smile. I think we're in trouble in a few years! He is such a good brother. He is just progressing so nicely as well...tipping the scales at 16 pounds now, sitting up, cooing and grasping his own bottle to feed. I'm so proud of this little guy.

Things are hectic around here trying to keep up with the two boys and on Jack's drug schedule, but we're starting to get a system down. Also, it seems as time goes by things will only improve.

We stopped by the PICU today and visited the parents of one of Jack's old neighbors. They waited, I say again, waited, on "the LIST" since February for their son to get a heart. The day after Jack left the hospital they got "the Call". There son is doing great so far and we look forward to a lifetime friendship with them as we'll periodically see them at "the Clinic". Our sons are members of that special club now.

Honestly it's too hard to have a lot of perspective right now as to where we are and where we came from. I think we know that something special and extraordinary has happened. We know Christ has touched our family. We know prayer is powerful and works. And finally, we know that there is a large community of family, friends, co-workers, neighbors and often complete strangers that are just one request away from helping you in a time of need. The true perspective of this journey will come with time, but the lessons we've learned already are those of a lifetime.

TTFN

Thursday, January 13, 2005 6:39 PM CST

5th Day Home!

From Dad

We're learning more about Jack and he's getting more comfortable around the house. The gas from his formula causes him considerable discomfort at times, but we're learning different techniques to manage it and it seems to be helping. I think the narcotic wean is going okay. One of the narcotics is down to just a whiff, while the other one could have it's daily dose cut in half, from where we started from on leaving the hospital, if things go okay today. If we could get these two drugs out of his system, I think alot of things would start to fall into place.

Tomorrow is another trip to the "clinic" and the U for a checkup. We're hoping for some drug reductions as it seems apparent to us that Jack does not need so much anymore. Also, he is basically off the oxygen that he came home on. Believe me, his lungs work just fine.

Cooper is adjusting to the new situation as well, albeit at his own pace. Having another baby in the house, as well as seeing his Daddy more often now, has him off center a little. He has been missing his naps and consequently is extremely tired. However, he isn't irritable at all, he maintains that smile and that infectious giggle that we all love. He is being such a good brother.

Another day in and a little better.

TTFN

Wednesday, January 12, 2005 5:07 PM CST

5th Day Home!

From Dad

It started our an all-nighter, with Jack moaning and crying every couple of hours. Could this be the wean? another problem with the G tube? Is he sick? Is there a problem with his head shunt? The bolus feedings? Or, is it just old fashioned gas?

By 5 a.m. this morning I was convinced it was gas related. The portegen sludge that he is being fed promotes gas. Also, the tube in which we feed him, combined with the nissen, allows for only one way for that gas to go - the bottom. I'd watch as he'd struggle and tense up to push more gas out. After about ten diapers through the night I was pretty certain it was the gas.

A quick call to the Transplant Coordinator for some wisdom and I think we have a handle on this problem now. I hope! I guess we missed this little lesson in the G tube class training we took. Also, this portegen isn't the best food in the world. We're looking forward to the 25th when the mic-key is in place, most of his wean is done (cross your fingers) and God willing he'll be converted to breast milk and regular formula by Friday.

We're working on bolus feedings now, doing 3 hours of feeding in 2 1/2 hours in our first attempt to "stretch" the stomach. Eventually we'll get this to a normal feeding schedule which will allow Jack more freedom from tubes, allow us to work with him on bottling again and move toward a sippy cup and cereal. Jack may never use a bottle much again.
Jack was assessed by an OT (occupational therapist) today to evalute his motor skills. All in all, for spending the first six months of life in a hospital, hooked up to a machine breathing for you for two and a half months and being on your back, he's pretty good. We have some homework to do to help in his recovery, but he will be able to catch up though. His brother modeling behavior will also help.

Cooper continues in his funny ways. He loves to play "push up" with me. I do my exercises by bench pressing him. I say "one Cooper", "two Coopers" with each reputation. He just laughs and giggles and usually has a long stream of drool going all over me. He's such a good kid.

At 4:00 p.m. today the house was quiet and there was order. I think (hope) we're getting a handle of things around here.

TTFN

Tuesday, January 11, 2005 9:43 PM CST

4th Day at Home!

From Dad

You know what -- it's a lot of work with twins around.

I know, understatement of the century for those parents of twins out there. But it is a constant circus around here. It doesn't help that Jack has drug demands almost every hour. Then, those drug doses are constantly changing as we continue to try and wean him off of the narcotics. So far so good, but I'm knocking on wood as I write this.

Today was pretty good though. Jack is still getting acclimated to home life and honestly I think he was a little scared the first couple of days. Tonight though, we started to get a few smiles out of him, so hopefully this is a foretaste of the feast to come.

Cooper is being a great brother. He shows Jack how to suck from a bottle and how to play. I've been playing with Cooper every moment that he is awake and I think the poor kid is just exhausted. He missed his morning nap so by about 1 p.m. he was plum tuckered out. He slept in his swing (his favorite spot) until the batteries ran out. He is such a good kid, so funny and so interactive. It's so great when he wakes up. His eyes flutter, come into focus and then when he recognizes you he gives you this big smile and giggles. It's great.

Robin and I are still slightly overwhelmed in trying to manage all the drugs, cares and two babies. Grandma helps in the equation, but the drug schedule is taking it's toll on us. We're hoping that when we go back to "clinic" on Friday we'll get the okay to discontinue some of these drugs. Not only are they a pain to draw and manage, but there are so many at times that they hurt Jack's stomach. That's one piece of equipment that we need in working order!

Oh well, this is a battle we've been longing for. Things will only get better.

TTFN

Monday, January 10, 2005 8:26 PM CST

3rd Day Home!

From Dad

Wow, the past 60 or so hours have been a blur since leaving the Hospital with Jack.

Here’s a quick synopsis of what has happened…Brother Cubby Cooper arrived at the U, along with Mommy and Grandma, around 10:30 a.m. on Saturday. Cooper came in a wagon with signs attached saying “my brother is coming home today and I’m the official welcoming committee”. We packed Jack up in another wagon and proceeded to do a “victory lap” around the PICU. Jack was up front with Cooper bringing up the rear; it was a sight seeing these two boys parade around. At the PICU it was like old home week, as most of Jack’s consistent nurses were there (except of course for Ms. Sunday) as well as the PICU Dr’s and his Surgeon. Everyone got a chance to hold Jack and say “so long” and “good luck”. As they said, moments like that are what make their jobs all worthwhile. I couldn’t agree more, many of these PICU Dr’s became more than caregivers to our son, but more like friends. Considering we spent so much time there, for so long, we got to know each other pretty good and it’ll be a little different not knowing how they're doing.

We then packed Cubby Cooper into the Altima and Grandma drove him home. Jack got in the new mini-van and drove home with Mommy and Daddy. Daddy probably hasn’t ever driven so carefully in his life. Jack was a little surprised by the “cold” of outside air, not to mention natural light. This was the first time Jack ever breathed or was exposed to the outside (except of course for the ambulance ride over to the U on August 3rd, but he was in a chemically induced coma at that time).

We arrived home sometime around 1:00 and immediately set about getting the Corbo Pediatric Care Unit (CPCU) set up. The boys’ Godparents had put up a large sign saying “Welcome Home Jack”. Next, there were drugs to draw up, feedings to begin, oxygen to administer, monitors to hook up, not to mention two fussy babies with needs of their own and full diapers to change. Before we could blink it was Sunday morning. Robin and I got maybe 1 – 2 hours sleep, but never in a row. The chaos continued on Sunday, but somewhat less so as we began to settle into a routine. WCCO called up to do a follow up on Jack around 3:00 p.m. and got here around 4:00 p.m. We finished the interview and Jack and I settled down to watch the 4th Quarter of the Vikings beating the Packers! I could already tell things were starting to improve. Earlier in the day, I made a mad rush to Babies R Us to buy a Pack-n-Play and a Poposan Swing. The addition of another baby to the household required different set ups, and the Cubby let us know that he was not going to give up his swing without a fight. I set up the Poposan and Jack has fallen in love with it.

All the activities of the previous day and half left us exhausted. I drifted off to sleep and next thing I knew it was almost midnight, time for Jack’s next medications. I missed the story on WCCO and only saw it today on the web for the first time.

Today started out early as we had to get both bear cubs ready to go the U for Jack’s first out-patient check up. He had to be there by 8:00 a.m. for blood draws (before his morning dose of immuno - suppressants). Jack’s day at the “clinic” went well with all signs being positive. No major changes on the drugs yet (we still have 18 drugs with 45 administrations during the day), but we have a follow up on Friday and hope to start reducing things then. Cooper accompanied Jack to the clinic and was such a big help to his brother!

After picking up another bag full of supplies we were back home preparing for the next few days. It’s great having Jack here, it’s our dream and prayers come true to finally have the family together. It sure is tiring though, but I think every day is going to be better than the previous.

God is good, we are together!

We heard that one of Jack’s neighbors at the U received his heart last night. God’s speed in your recovery buddy and congratulations, we’ll see you and your parents in “clinic” in the years ahead.

TTFN


p.s. Almost forgot a great little story about how things are getting back to the "way they should be". While doing the interview with WCCO we were holding both boys. Jack started to cry a little. Coop looked over and figured he should do the same. A little forced pucker and then a little cry and soon both boys were in sync. It was fun and we've waiting for a long time to hear that music.

Sunday, January 9, 2005 3:24 PM CST

2nd Day Home

From Dad


WCCO is coming out to do a follow up tonight. It will be on the 10 p.m. news or following the end of the footbal game. You can also see it tomorrow on www.wcco.com, just do a search for Jack Corbo.

Saturday, January 8, 2005 6:25 PM CST

1st Day Home!

From Dad

Jack is home.

We are excited and past exhausted as we gear up for two boys in the house. All the drugs and equipment needed for Jack is going to keep us busy. It was pure joy and pure chaos around here this afternoon...two boys crying, two sets of diapers to change, drugs, drugs and more drugs to prepare, food to prepare and equipment to set up.

But, today is the first day home.

Jack is settling in and is fast asleep - peacefully right now. He and Coop watched Elmo and fell asleep. The picture and scene Robin and I have been waiting for for sooo long.

I'll write more tomorrow...

TTFN

Friday, January 7, 2005 8:50 PM CST

82 Days Post Transplant

From Dad

24 Saturdays ago, about 11 a.m., I was outside sweating as I was mowing my lawn. Robin stuck her head out and yelled my name to catch my attention, saying Jack was sick again. Over the next few hours it seemed as if our world stopped as we heard the devasting news. We were stunned, shocked and in dispair. Only five weeks earlier our two little boys entered this world under much fanfare, now one was in jeopardy.

Tomorrow, at about the same time, Jack will enter our minivan, after taking a victory lap around the "Floor" and the PICU, and head home! He'll have his first exposure to the outside world (this time its cold instead of that warm, humid July air of 24 weeks ago). We'll travel the 25.1 miles (not that I've ever counted -- interesting fact as this tax guy gets ready to do his own taxes, we've logged close to 30,000 miles coming and going to Hospitals in 2004) to our house in Victoria. Finally, Jack will begin his true healing.

I am so proud of him. I am so proud of Cooper and what he has meant to our family through the thick and thin. Tomorrow is a day of celebration. We know that the life of a transplant recipient isn't a guarantee of "no more hospitals", but we will sleep more easily knowing that this journey was brought through the Grace of God. He has a plan for these boys, the past 24 weeks was merely a chapter, with many more yet to write over the coming decades.

Tomorrow our house will be complete. All of our children (and us) will be under one roof. We've received so many pieces of equipment, training, drugs and other medical items that we could open our own ICU. Small price to pay though to have this guy home.

There are many emotions running through Robin and I now. Too many to write, but they range from pure joy to anxiousness over finally having him at home. We don't have a Dr 25 feet away anymore to yell for if we need help. Now we have to go 25 miles. But it's worth it. Jack goes back to get his first outpatient follow up on Monday, so I guess the cord isn't quite fully cut yet.

Cooper is being a great brother, showing Jack the ropes already. He spent the whole day at the Hospital with Jack, showing him how to use the swing and how to whine just right to get Mom or Grandma to jump. Coop is so damn cute though it's impossible to do anything but smile and comply with his requests.

Thanks to all of you for keeping the faith and keeping our spirits up. I'm going to continue this journal for a while, maybe 'til their first birthday, just to chronicle the journey. Without you, your prayers and your kind words of advice and encouragement, I don't know how Robin and I would have kept our sanity. Thank you.

I want to let you know that while Jack's story hasn't been easy, and is an inspirational one, there are many of his buddies here at the U who are still going to be here after we go home. They and their families have stories of their own as they wait for their Gifts of Life to arrive. Please pray for them as well, as you keep Jack in your prayers. Every one of them are heros in my book as well.

Finally, the one family that we may never meet is the source of our deepest love and admiration. We have finished our letter to them and will send it to them soon. I hope that someday I can personally thank them for giving so much at such a time in their lives. Our family will honor their family forever...such courage and unselfishness.

Thank you and may God bless you. Also, stay tuned, tomorrow is just the beginning.

TTFN

Thursday, January 6, 2005 9:58 PM CST

81 Days Post Transplant (Supplemental)

From Dad

Preliminary reports indicate:


JACK IS COMING HOME ON SATURDAY!!!


PRAISE THE LORD!

Thursday, January 6, 2005 12:18 AM CST

81 Days Post Transplant

From Dad

Sorry, missed yesterday’s post due to extreme fatigue.

I’ve been living on “the Floor” for the past two weeks going through all of Jack’s ups and downs. Until last night, Jack was having a very painful experience at night; which meant he was whinny and crying all night long, no amount of drugs or positioning could settle him down. Consequently, I have not managed to get more than 1 hour of sleep in any single stretch.

Enough of my whining.

Jack had another GI test yesterday to confirm nuclear medicine’s finding that his G tube was passing into his intestines. The theory was that the tip of the G tube had migrated through his stomach and was inside the flap into the intestines and was causing a partial block. This in turn was causing fluid to build up and extreme pain. Added to the mix is the cocktail of drugs that he’s own all tend to slow down the motility of the gut itself.

Anyway, the GI test yesterday showed the exact opposite of what they expected. The G tube tip was placed properly. Fluid was draining almost immediately into the intestines (as seen under fluoroscopy) but otherwise things seemed to be working normally. The GI Dr figured that all of this is probably an indication of the G tube not being secured on the outside of the stomach properly and floating back and forth. The natural tendency of the stomach is to push something inside of it towards the digestive track, and if not properly secured it’s normal for the tube to float down that way. Apparently, for an unknown reason, his G tube was properly placed yesterday and was not causing him pain.

Sounds like a good explanation right? Well, it’s never that easy with Jack and it was recommended to us that Jack have more tests done today. These tests would rule out a “slow-gut” syndrome or other mechanical obstructions, maybe associated with the nissen or possibly even the VP shunt surgery. Fine, we initially agreed to yet another test. However, later that night another Dr came into the room saying that Jack needed another IV then, because they were going to have to shut off his feedings and he was at risk of dehydration. (Jack got his one remaining IV removed yesterday morning). This thrilled me and I eventually talked them into doing it in the AM rather than immediately. The study wasn’t even scheduled yet, so I figured let’s wait until the last minute before we stick the poor kid one more time. This whole IV thing was in my mind all night long. Jack had a great night, going up to full feeds and peeing and pooping exactly the way he should be.

The lab vampire came again this morning for another blood draw. Jack of course was not happy about this. Again, they take so much blood from this kid that from time to time he needs a blood transfusion; tell me if that passes the common sense test? After Jack having such a great night and the morning lab, and a phone call with Robin that confirmed that even if the GI test came back with a recommendation of putting Jack on Reglin we were not going to consent to that drug, we decided to cancel the test. I told one of the Dr’s this morning about this and it wasn’t received with open arms.

We’ll take a chance and let Jack eat at full throttle today and keep track of that damn G tube. I think he’ll be okay. If a problem develops we can re-evaluate, but at some point you just have to let the kid rest and recuperate. I’m at my wits end here, sometimes I feel as if no one is in charge of the care or coordination of Jack, and at the same time the only people who want to be in charge aren’t given the proper authority or don’t have the proper experience and training. Each one of the specialties have their little jurisdictions carved into his body and none talk to each other. . . or, more frustrating and frankly negligently, don’t talk to us on a consistent, coordinated basis. This whole experience, since July 31st, has been a roller coaster of emotions, however, we are people who can see through the emotion and make rational decisions if given evidence and a persuasive argument.

I am being honest here and I want it known that overall we are not dissatisfied or ungrateful for the talented team that has saved our son’s life. We are blessed in so many ways to have such a team in our metropolitan area. Also, frankly, without them we might not have Jack with us. We love them for this. However, there are some issues that aren’t addressed efficiently and have caused Jack’s time in the hospital to linger too long. And, as I’ve tried to make the point before, a patient, let alone an infant, cannot heal in a hospital. The time has come for Mom and Dad to take over and begin the healing at home.

TTFN

Tuesday, January 4, 2005 7:39 PM CST

79 Days Post Transplant

From Dad

Cooper finished his PT today for torticollous (sp?). They said he has a perfectly shaped head now and is doing just marvelous. He of course woo'ed all the females at the clinic with his smiles and personality. I haven't seen him since Sunday afternoon, so I'm going to need a little Coop recoup time soon.

Jack started the day with a dramatic turn in his "output" and hasn't stop since. He has put more fluids out today than the last three combined. This is good of course as it'll take some of that excess fluid around his lungs and stomach away, which in turn will allow him to breath easier.

Jack then took another trip down the elevators to "nuclear medicine". A rather omnious name for a big x-ray machine. It was a little scary though for Jack. They first put some fluid into his stomach to track it's movement through the GI system. Then they put him on the table and wheeled this giant round disk down on top of him. It was so close that his long eyelashes could touch the metal. He was scared he was going to become a flap"jack". They started the process of mapping the progress of the fluid when I asked how long does Jack have to lay still? 90 minutes. Right, as if on que Jack starts to sniffle and cry. Robin came into the room about 30 minutes into it to relieve me as I had to beat feet into work.

We anxiously awaiting an indication as to what the test revealed. This afternoon a Resident said it looks like his "G" tube has worked it's way into the upper intestines and this is causing food, fluid and other junk to back up. He asked, does this cause Jack pain? Hell yes! We thought it might be the narcotic wean, but I think it's this. So what's the fix asked Robin? "This was probably caused by the Surgeon putting the G tube in the wrong spot. We'll have to put another G tube in then." Meaning . . . another operation, another intibation period, stopping feeds, sedation, etc... a huge step backwards! Needless to say Rob and I were fit to be tied - rage over having to put that baby through another procedure that could have been avoided.

A few hours later, while sitting in our stew, we talked to a trusted and knowledgable friend, who has inside information on these types of issues. It appears that the Resident is probably all wet (Not the first time this has happened, we need to learn to greatly discount opinions from Residents). I think the tube itself can simply be pulled back with no evasive procedures done to Jack at all. We are hoping that this is the major cause of Jack's abdominal girth and pain issues. This is probably a contributing factor to what appears to be a painful withdrawel process from the narcotics as well. Jack will have to go through another test tomorrow to make sure this is the issue, and then we'll find out officially what the problem is and what can be done about it. We pray that it is a simple procedure and that it's the key to unlocking many of Jack's remaining small, but nagging, issues and put him on the path to freedom soon.

Please pray for this, Jack deserves a break and he deserves to come home to a loving environment where he can heal!

TTFN

Monday, January 3, 2005 7:05 PM CST

78 Days Post Transplant

From Dad

The first work week of the new year brought about its challenges as we deal with the logistics of having children at two locations. Of course, Robin thinks it's just my forgetfulness; which she is probably right. I went home last night to get clothes for work and thought I had everything packed for a whole week if need be. Wrong - forgot shoes! I guess that's better than forgetting underwear but still looks silly going to work in roughed up tennis shoes.

Jack is doing fine. His belly is still large, but I don't think as bad. His day started out, as it usually does, with a flury of activity. All at 8 a.m. First, lab comes in for a blood draw. Then Jack has a hissy fit. Then his nurse comes in with the moring drugs. Jack's tummy hurts. Then Jack has to be weighed (nearly 14 pounds). Then Jack has to be measured (25 inches). Then his blood pressure and temperature are taken. Then his room is cleaned. Then daddy has to take a shower and get ready for work. Then Jack's diaper needs changing. Then Jack cries until he's dry. Finally, the clock strikes 8:30 and it's time for Daddy to get going to work. Mommy is due to arrive within an hour.

Jack's enlarged tummy is probably due to a slow down in his digestive system from the narcotics he's still addicted to. We're going to have the GI specialist perform a little test with dye to make sure there are no blockages or other problems. Assuming there isn't, which we think because x-rays and other tests indicate all systems functioning, albeit slowly, the Dr's are going to recommend we put Jack on Reglin (sp?), which is supposed to speed up the digestive system. We're doing research on this now to see what is involved in this drug, but we've heard that it has some nasty side effects. We're not too excited about this. Also, if it's the methodone (narcotic) that's making him slow down, let's work to get him off of that instead of adding another drug to the mix.

This is the last issue though, and then Jack will be home and the real healing begins.

Cooper is doing just fine, funny as ever with his cooing and smiling with Mommy. He's has an appointment with PT tomorrow to see how his torticoulous is coming along. We suspect that they'll give him the gold stamp of approval and he'll be off to the races -- as his head looks plenty round to us now.

We're a little worried that Coop might have to make an adjustment when Jack gets home. But believe me, we'll work through that issue quickly. Also, we're trying to figure out sleeping arrangements, as we're a little too attached to let Coop sleep in the nursery by himself, and there is no way in God's green earth that Jack is going anywhere out of our sight. Also, we don't want to co-bed them yet, since Coop is so much stronger than Jack right now; we're afraid he might hurt him with a left hook while in a dream or something. It's possible we'll have two pack-n-plays in our bedroom.

Holding steady here, hoping tomorrow brings definitive answers and solutions to Jack's belly issue...cuz, it's homeward bound then.

TTFN

Sunday, January 2, 2005 8:08 PM CST

77 Days Post Transplant

From Dad

*More pictures posted*

A pretty good day for Jack. The Resident and myself came to the conclusion around midnight last night, that Jack's abdominal girth issues aren't associated with his feedings. It probably more has to do with the output area of that region, which can be slowed when narcotics are used. Viola, our Jack. I think this is the issue. We've gone up on his feedings all day, very slow, the way Jack likes it, and he's been managing okay. We're almost up to full feeds which is great, because if we lose that one remaining IV in his right foot, it won't have to be replaced. That IV is only there for fluids now, which will be covered with the food. All his medicines are now delivered orally (actually through the G tube).

His "ins and outs" are holding steady and his abdominal girth is a little better also. His demeanor has approved from a few days ago as we know now more on how to manage the issues. Also, he needs a little help every now and then getting the waste products out. He always feels better then.

My life is basically boiling down to watching, hoping and praying for my kids to go #1 and #2 when and how often as they're supposed to.

I spent some time with Coop today. The little boy is fun and just developing like crazy. He can hold his own bottle now. I can't wait to get the two boys together to see how they help each other out.

Robin spent some quality time with Jack today and he was all smiles for her. A lot of healing was accomplished today.

If things continue, and if Jack wants it, there is a more than a realistic hope that by this time next week I'll be using my own computer to post these entries. Of course it's all up to Jack, and we'll be there through thick and thin, but I'm more optimistic now than before.

TTFN

Saturday, January 1, 2005 7:33 PM CST

76 Days Post Transplant (New Years Day 2005)

From Dad

Let's see, 2004, it was a hard year with Jack's heart condition, the transplant and the continuing recovery. Also, having twin infants, one at home and one in the hospital, is total havoc on our lives.

On the other hand, on the positive side, Cooper and Jack were born this year. God renewed his gift to us with a donor heart on October 17th. Case closed, that's all I need to hear - it was a great year!

I brought in the New Year with Jack, just holding hands and both of us slowing healing form the trauma of the past six months. Robin was with Cooper, just happy to have a little one in our house and laughing with the funny little guy.

Jack continues to have ups and downs as we try to get through this last leg of the recovery. When we first transferred to the Floor 9 - 10 days ago he was breathing fast (80-90x a minute) and retracted. A quadzillion examinations and opinions rendered the verdict that this is just the way Jack breathes. (See what 12 years of schooling allows you to say!) After 9 - 10 days of rest and calm, followed by short intense periods of wailing, Jack's lungs and breathing are looking better. His respiratory rate is in the 40s and he doesn't breath with such retractions.

However, he is having trouble with his feeding (we think). His belly keeps getting enlarged and then going down again, and we're not sure of what the reason is. We're going up and down on the feeding rates. We're taking x-rays. Consultations. Examinations. Suppositories and dirty diapers. Still, it's an up and down thing with this belly. We think this probably has more to do with his sudden intense crying outbursts than the narcotic wean, but the problem is there are so many variables in this equation its hard to pinpoint what's going on. The frustrating thing about it is we all know once this is figured out, and once it's controlled all the other teritary issues will fall into place...and he'll be on the way home. So, we continue to try to find the answers.

My anger and frustration of the past week is pretty much gone. I've yelled at a few Dr's and Nurses the past few days and realize it's not helping the cause at all. They are doing their bests (most of them at least) and especially the Cardiology team here is great. My appreciation for the nursing profession is top shelf now, these people are totally dedicated (most at least) to helping and healing.

As I was driving in to the Hospital tonight (through a rain storm, with thunder and lighting, in Minnesota on Jan 1st!) I realized that thanks to them I'll be able to play baseball with my boys. On August 3rd I didn't know if I'd be able to do that or not. So, it's time to get back to who I unually am - optimistic and not antagonistic.

I finally got to spend a few minutes with Cooper tonight. Robin keeps telling me that this kid is hilarious, which I of course already knew, but she wants to emphasize the point. She's right! It's the myraid of little things he does, like his smile, clasping his hands over the bottle, and that slightly devilish giggle. Back at Children's Hospital he was the one that wanted to be left alone, we would peek in every now and then and he'd managed to be all contorted in some strange position. How a not quite 3 pounder could do some of that I'll never know. He's kept that personality.

Speaking of Children's Hospital and serendipity, yesterday we went to a restaurant to celebrate Grandma's birthday. Who sits down in the table next to us but the nurse the transferred Jack from Children's to the U of M. I saw her and it was a rush of emotion and memory of that day. Also, it must be a way for the circle to be closed, meaning Jack is on his way home soon.

I have had my moments the past two weeks. I've come close to "losing" it several times. We try to keep the big picture in mind, but it's so easy to be caught in the mire of this recovery. Although, last night at midnight while Jack and I were holding hands, I realized he's helping me through this as much as I'm helping him. Him and Coop, they are our strength and they are worth all of it. Besides, what do I want to tell St. Peter when the time comes? -- I was well rested and avoided stressful situation as much as possible or I held my son's hands when he needed me to, through all the good and bad times.

I think the answer is clear.

TTFN

Thursday, December 30, 2004 11:08 PM CST

*******See New Picture of Cooper*******]

74 Days Post Transplant

From Dad

Last night was a little nerve wracking, especially for Grandma as she gave me a night off. Jack lost his RA line in the early evening and then needed to get an IV. As we know, Jack doesn't give his veins up very easily, so this took several pokes before finally starting it. In additon, througout the night he needed several more pokes to get blood for labs, weight in's at 4 a.m. and numerous unnecessary interruptions for vitals.

By the time I got back here in the morning the chaos was largely over and it was time to set order back into Jack's world. It's too bad Grandma had to experience that kind of night, but the time off was certainly appreciated.

Mama and Papa Bear have re-established their domain over their little cubbie. With the help of Tricia, one of Jack's new favorite nurses, Jack got to sleep almost uninterrupted for 6 hours today. He did great. He's been peeing and resting and looking much better.

With the loss of the RA line they decided to pull it along with the temporary external pacer wires. I guess that issue is over with now, Jack does not need a pacemaker! A potential surgery avoided! We'll have to rely on the IV for his one remaining diruetic until that can be switched to an oral dose (actually G tube dose). This might take a few days, but it's coming. The only bad thing is that he'll need labs every now and then, and that means pokes!

Robin and I went out to get a bite to eat this evening. When I got back I noticed Jack's belly was bigger than before. I've been keeping track of it over fear that his head shunt was delivering fluid to his belly and his belly couldn't absorb it. Our biggest fear if you remember, because if it couldn't it would mean another operation to put the drainage into his heart. This is not that uncommon in general, but never been done before with someone with a heart transplant. Terriotory we didn't want to blaze. The neuro surg team evaulated Jack tonight and were very pleased with his results. Also, they looked at the past chest and belly x-rays and are almost certain that the shunt is working 100nd his belly is handling it nicely.

Then Jack had a few dirty diapers and his belly decreased by 3 centimeters in less than 15 minutes. Gas! I think we went up on the feeds a little to fast and he was having a hard time keeping up. An easy fix and we'll keep the rate steady now until he can catch up.

Another interesting thing happened today with Coop. Jack slept most of the day, with alot of REM sleep...very cute. Cooper also slept most of the day, rather uncharactistically of him. Coincidence? - I think not, these boys are communicating with each other over 25 miles distance and being only 6 months old.

Making progress. Papa Bear will stay in the cave the rest of the night letting his little cub rest and get stronger.

TTFN

Wednesday, December 29, 2004 6:39 PM CST

73 Days Post Transplant

From Dad

I believe (hope and pray) that this morning, about 1 a.m. was an ephiphany.

Maybe not always explicitly, but I have always been taught that there are three elements to life that must be in balance in order for you to fully experience and enjoy your time here on earth. This theme of three is common throughout our society at large. There are the three traditional professions: (1) professions of science (Dr’s and Engineers), (2) professions of the intellect (lawyers and academics) and (3) professions of the spirit (the clergy and political leaders). Of course, this follows the Holy Trinity of the Father, Son and Holy Ghost. What I’m referring to is the need for harmony amongst the physical, intellectual and spiritual sides of our life. Nature will seek a balance and if one concentrates on only one leg of this stool, you are off balance and cannot fully experience the life God intended for us.

Yesterday was a tough day for Jack, consequentially for me and Robin too. The celebration over Jack’s rejection had to be put on the back burner as immediate concerns over his renal and pulmonary systems seemed to abound. He wasn’t peeing. He completely shut down around 10:00 a.m. yesterday before the heart cath. Not a drop in 16 hours despite massive amounts of diuretics. His breathing was getting more labored and retracted. His belly was distended and he had air trapped in his bowels because of it. His behavior was changing, as he was no longer the smiling Jack nurses came to see, but a fussy, crying, inconsolable infant. He frequently broke out in rashes and hives. His body language was defensive, he was all pulled in and tight, just like he was immediately after the transplant.

The Dr’s were mystified. Tests, labs, ultrasounds, x-rays, consultations and huddles were conducted and no explanation could be offered. Everything they did showed normal functioning and no need for concern. Still he kept clamped down and would not urinate and was consequently getting very fluid overloaded. He was getting puffy just like after the transplant again (of course no where close to as big though). At 1 a.m. I was awakened by Jack, who was coming off a Benedril high, crying loud and unstoppable. He was redder than a lobster and looked like he was in pain. The Dr. ordered more blood draws to see if there was anything wrong, but she was stumped upon clinical examinations.

I was exhausted and out of ideas. I turned the lights down in the room, turned his music on, got Jack comfortable in his crib, got his friends the Fluffy Puppy, Goldie the Gopher and the Elephant all around him, got the wonderful mobile going and sat down and held his hand and patted his tummy. Ten minutes later he stopped crying. Ten more minutes he was breathing very smoothly and evenly, and his oxygen sats were almost perfect. Ten more minutes he had a very wet diaper. Ten more minutes he was smiling, laughing and we were playing “so-big”. I knew then that the lab’s just drawn were going to come back all normal.

I got the Dr in to observe, she could not explain it and walked out. I then spent the next 8 hours, more or less, holding Jack’s hand, talking to him and patting his stomach. He did not have a problem urinating anymore! Later on, around 3 a.m. the Dr came in and said all the labs were normal. When I left for work this morning he was laughing and playing with the nurses. The Dr’s gathered around his bedside and he laughed and stuck his tongue out at them. Robin spent the entire day holding him and bathing him in motherly love.

I think too much of the effort has been spent on the physical and intellectual side of Jack’s equation and he was letting us know. He was not getting what he needed emotionally. The Dr’s are probably the most ill-equipped people on the planet to help a baby in this regard, and if you don’t assert yourself as the parent, providing that loving support, then your child will get unbalanced care. Jack just needed to be loved. Not that he wasn't ever, just that he needed to feel that physical manifestation of it...that physical touch of a Daddy holding his son’s hand…of a Mommy holding him and watching every move he makes as he is cradled in her arms. It worked!

I think back over the past six months and those moments of truth for Jack always had a perfect balance of this trinity . . . and there was always that physical touch that brought the emotional side of the equation into balance. For instance, the day Jack and Cooper were baptized, the Dr’s had the physics covered for the drug induced coma to preserve as much of Jack’s cardiac function as possible, the Priest provided the intellectual stimulation and Cooper reached over and laid a hand on his brother’s chest, saying I’ve got you covered bro. The day Jack had his “heart attack”, again the Dr’s had the physical side covered, pumping his chest, intellectually he didn’t need much but emotionally I held on to his feet and said, 'you can do it little buddy' as they were thumping away on his little chest.

I think yesterday’s hives, rashes, behavior changes and renal pause was just anxiousness. The Dr’s with all their science and tests couldn’t offer an explanation. I asked God to fill Jack with His Grace, and He did last night. I think a major corner was turned. I hope and continue to pray that it was and that he’ll be packing his bags to get home to his brother soon.

TTFN

Tuesday, December 28, 2004 8:15 PM CST

72 Days Post Transplant

From Dad

Another milestone in this journey, as today marks the length of time we had to wait for a donor heart. We're still in the Hospital and Jack is still on the slow train to recovery. He's getting there though.

Today, Jack had his second heart catherization to take a biopsy and check for rejection. The result - No rejection! Excellent news for Jack's long term survival and quality of life! It was an anxious day as I traveled with Jack down the hallways to yet another procedure, but in the end it was worth it.

On other news though, it was a tough day for Jack and us. Jack stopped peeing for most of the day and developed several episodes of rash. The worse episode is going on right now as I write this. We don't know what this is from, but it has to be one of the drugs he's getting. The backup in pee is keeping fluid in his body, effecting his respiratory rate and delaying other things. We are trying a variety of drugs and techniques to make things flow again. Actually, just a few minutes ago Jack had his first dirty diapers, so maybe things are starting to turn around.

The day was very frustrating. I got almost no sleep last night as Jack was crabby and other events occured. Cooper was just as fussy for Mommy and caused her to get as much sleep as me. I think I'm going to rest my case as to this twin thing.

Last night, 4 in the morning, I'm fast asleep having just dealt with Jack being crabby and having an upset stomach for the last three hours. Jack is finally getting some rest. Pop, the lights go on and this Neuro Surg Resident rushes in. I somersault out of my rack wondering what the heck in the matter. He says he's there to remove Jack's stitches from the shunt surgery (about 15 on his head and 7 on his stomach). Okay, my groggy mind says, when are you going to do it? Now he says as he rips off one of the dressings. Jack wakes up and cries. I tell him the next time he does that I'll do it to him. He apologizes. My blood pressures is overflowing. He is gentle on Jack now but all I can think of is putting my size 11 up his butt. Later I tell Robin about the episode and she had more colorful thoughts.

A trying day, with good news for the long term and continued nuisance issues on the near term.

One final note, while waiting for Jack to come out of the Cath lab Corey Winthrow and Rosenthal (forgot first name) from the Vikings came and visited us. You can't believe how big these guys are in person. It was nice of him to visit us as we thanked him for being "Jack's buddy". He said Jack was just the most happy and excited baby he's met and was especially happy to hear that he was a twin as he has twins of his own.

That's about it for now. Another day here in the Hospital and hoping to get out soon.

TTFN

Monday, December 27, 2004 8:14 PM CST

71 Days Post Transplant

From Dad

I just have to comment on the twins and their behavior. As Jack starts to gain a little strength here, we start to play with him some more and his personality is starting to come out more (he already is just a great kid, this is just icing on top). Now Cooper and Jack have basically been seperated since birth. While at Childrens they were in different isolettes for most of the time and only co-bedded for a few days towards the end; and now of course Jack has been at the for the past 5 months while Cooper has enjoyed the riches of Victoria.

This is a long enough time to develop their own little quirks and habits - right? Wrong, it is simply uncanny how these two boys act exactly alike. From the shake of the head to look at something, the raising of the eyebrow when looking at you, the wide eyed stare when they first wake up to a thousand other little things...there is no doubt in this non-twin's mind that there is something special between twins.

Cooper is doing better, he still has a little junk in his lungs but is feeling and sounding much better from his respiratory virus. He has even started to eat like a Cooper again! I must tell you though that due to logistics I will not see him probably until tomorrow night, if not Wednesday. I miss him terribly.

Jack is doing okay. His respiratory rate and effort is better today than yesterday, but still not where it should be. The Cardiologist will do a heart catherization tomorrow to rule out rejection. (This takes place at 8:30 a.m....so Rose, can you cover for me for a while...I'll be late!) We don't think it's rejection, but you can't be too safe with this. Also, Jack would have had a catherization done in a few weeks as a matter of routine anyway, so this will take the place of that. We think his lung issues are just from the facts of his long wait, premiee status, and then the longer than expected recovery while still on the vent. His lungs need time and nutrition to fully mature. It's hard to see this though.

He also is retaining fluid around the lungs, which he is having a hard time expelling. However, his feedings are going good and his digestive system seems to be in top form.

So you have a little good news sprinkled in there. Tomorrow will be an anxious day as we await the results of the catherization (the procedure itself is a little nerve racking - opening up the jugular in the neck and snaking a hook down to the heart to grab a piece of it). However, I think once we get the respiratory issue under control, and there are no other major issues, like acute rejection, there is little reason for Jack to be here anymore. Home!

Pray that this happens soon.

TTFN

Sunday, December 26, 2004 7:03 PM CST

70 Days Post Transplant (10 Weeks)(6 Months Old Today!)

From Dad

Jack had another "okay" day as he continues to have periodic "labored" breathing and issues with fluid retention around his lungs. His daily x-ray did show improvements from yesterday, so hopefully we're moving in the right direction. They have increased his diuretics a little more and are watching his fluid ins and outs very carefully.

Jack and I spent the whole day checking diapers every 15 minutes for more pee, praying for pee, praying for less labored breathing and watching football. I must confess that during parts of today I didn't know if Jack was ever going to get out of the Hospital. I think the breathing issue (again), the holidays and the fact that today is their six month birthday all weighted heavily on me. I think Robin is experiencing the same thing.

However, on the ride home this evening, to take a shower and get some clothes for next week before returning to the Hospital, I started to put things in perspective. It's hard to see Coop making all this progress and still see Jack laying on his back in the Hospital. He barely has the strength sometimes to turn his head. He's been there so long, on the ventilator so long, that he just hasn't had the time to develop his muscles. I'm confident that he'll make up for loss time once WE get him home and he has his brother as an example. But sometimes that day seems like it will never happen. It makes me cry sometimes.

As soon as I start to feel this way though, something happens. Today, Jack had a period where he was wide awake and keenly aware of his surrounding, looking at me right in the eyes. (As opposed to those other times when Jack is either asleep or falling asleep.) I said "I love you" and instantly he smiled at me in understanding. He starting to "cycle" with his legs like Coop and even made his first coo's.

It's amazing as our little hero son seems to provide me with the strength to carry on. I thought it was suppose to be the other way around. Never, Never, Never Give Up, to quote Winston Churchill; that is our motto as well.

I'm home visiting Cooper for a few hours as Robin's with Jack at the Hospital. I'm going to go play with the that funny little guy to gather some more strength and then head back.

TTFN

Saturday, December 25, 2004 8:04 PM CST

69 Days Post Transplant (Christmas!)

From Dad

**New pictures posted**

Today was a "shuttle holiday" to the extreme for our little family. I started out here at the U and found that a secret Santa had visited us and left Cooper and Jack some presents. After the morning meds, I drove home and saw the Coopster for the first time since the night in the ER. He was feeling much better. Coop, Mom, Dad and Grandma then went downstairs and opened presents in the family room I made last year. Mommy designed this room specifically for this occasion. Cooper loved to open presents! He didn't really care what was inside the wrapping, but tearing the paper off was such fun...then shoving it in your mouth...can it get any better? Mom and Grandma then went to see Jack and celebrate with him, as Coop and I stayed home and took a nap. Finally, Mom and Grandma came home and we had a Christmas dinner together. Cooper even joined us at the table, sitting in his new highchair for the first time. He thought he was hot stuff sitting up there with the big people. I'm now back here at the U and Jack and I will finish out the night together watching a little TV and resting.

What a first Christmas! It could have been better, but it could have been much worse. In the end, we are all very, very blessed! . . . and we'll have many more ahead of us to celebrate.

On the health front, Jack had just an okay day. He continues to rest and get stronger, but his breathing was labored today as he continues to hold on to fluids in his body, especially around his lungs. This is exactly what he did last time he came off the vent, so we know his lungs are a sensitive. They had to increase his bumex drip to every 2 hours, from every 4, to start to take the fluid off. So, the watchword is "pee" again.

The good news though is Jack is tolerating full feeds, and of increased calorie count. Doing great here and this will only help him gather strength and grow, which will ultimately mean he will beat all these other nagging issues. I think tomorrow we'll start to wean from the portigen formula (low fat and smells like sour milk) to breast milk and then a more normal formula (probably the same one Coop is on). We'll do this gradually to make sure his lymph system is healed properly. As long as Jack doesn't start to put out a bunch of fluid around his lungs associated with his lymph systems, then we're okay (this was an issue immediately after the transplant where his lymph drainage ducts were cut. A low fat diet was started to dry up the leakage and get him back to heal the system).

With the exception of the diuretic (bumex) IV, all of the issues above, including others like the narcotic wean, can be done at home. So again, pee is the name of the game! Next week is quite possible, but it's up to Jack ultimately.

That's about it for now. Hope everyone had a great Christmas and enjoyed spending time with family.

TTFN

Friday, December 24, 2004 7:21 PM CST

68 Days Post Transplant (Supplemental)

Christmas Eve Night

From Dad

Childhood memories of this night are great and we can't wait to create those memories for the boys.

Jack had a pretty good day, just watching his tolerance of food, his in's and out's on fluid and making sure he's comfortable. A pretty uneventful day for Jack, which is the best present available. Jack took the opportunity, along with Dad, to take a five hour snooze -- uninterrupted! Great healing time for Jack and great recoop time for Dad, and great bonding time for Father and Son.

I understand Cooper is doing much better after last night's trip to the ER. He's resting and starting to get his comedian personality back.

Robin was here to see Jack and we both remembered last Christmas and our wishes. Guess what? - we got 'em. We made another wish this Christmas and I bet next Christmas we'll be looking back being thankful for the gifts of the upcoming year.

It's hard not to be melancholy sitting here in the dark, alone at the end of a Hospital wing that has been vacated for the Christmas season. But you know what -- it really is the best Christmas yet because of the two presents given to me earlier this year, and then the renewal of one on October 17th. I'm going to go back into our room on the Floor and spend some time with Jack now . . . who knows, maybe Santa will stop by??? I know Cooper and Jack are on the top of the list of Good Boys.

TTFN and Merry Christmas

Friday, December 24, 2004 8:38 AM CST

68 Days Post Transplant

From Dad

Just a quick morning note on Cooper, I'll post more on both boys later today.

Cooper decided that enough was enough, his big brother was getting all the attention. Coop's cold seemed to have taken a turn for the worse last night. Shortly after Mommy got home from tucking Jack into bed, she noticed that Coop was having a much more difficult time breathing and was running a slight temperature. Also, he was lethargic, wasn't wetting many diapers and had little interest in food.

Some of the classic signs for RSV, we were scared out of our minds. Robin called the Pediatrician's hotline and they told us to bring Coop into the ER. I bundled up and ran to the parking lot to rush over to Children's Hospital. Coop, Robin and Grandma braved the coldest night of the year (I heard -30F wind chill) to get to Children's ER.

It felt almost like going back to your alma mater...which in itself is scary. The ER Dr's checked Coop out, who managed a couple of his famous smiles in spite of being so sick, tired and out of sorts. They determined that he probably does not have RSV, but his cold has moved into his respiratory system. They gave him some medicine through a nebulizer (sp?) and shot an x-ray. No pneumonia and the cool, medicine filled vapors seemed to do the trick for Coop. He was out like a light bulb and snoring away. The Hospital gave us the nebulizer to add to our collection of infant healthcare devices. I think we almost will have enough for our own NICU by the time Jack comes home.

Anyway, Coop seems to be doing much better now. Our deepest fear for his health has seemed to pass and we won't have two boys in two hospitals for Christmas.

Thanks so much.

TTFN

Thursday, December 23, 2004 8:34 PM CST

67 Days Post Transplant

From Dad

Cooper is fighting that nasty cold. He may be up against the ropes, but he's showing that the strong spirit and Corbo moxy isn't just with his brother. He still manages to smile, giggle and just thinks Mommy opening the mail is the most hilarious thing in the world. Last night we were so worried about him that we let him sleep in our bed, between us. Now this isn't unusual in itself, except that we wanted to keep his head elevated so we put him in the car seat. Then put the car seat with Coopie in it between us. The little guy, after a little persuasion, fell asleep and rested.

Coop will have to do the same tonight, however he won't have his old man there with him unfortunately. I'm here on the "Floor" with Jack back in his old room. After G tube training this afternoon, we packed Jack's belongings and trucked him over to his new (old) digs. He liked the trip...it was one of those rare trips in his life that didn't involve getting poked, cut, straped down, tested or shot full of x-rays. He was all smiles and is liking spending quality time with Daddy.

We talked to one of the Cardiologist today on "the Plan". Here's what Jack needs to do to get home: (1) get off the IV of bumex and onto an oral dose of a direutic, (2) control his breathing a little better (he's going a little fast right now), (3) tolerate his feedings at full throttle and move towards bolus feedings (e.g. "all at once") and (4) stay away from infections or other complications.

Of course the actual date of his release will ultimately be up to Jack. The Cardiologist said that Jack has shown in the past that he likes to take things slow and doesn't like a lot of change all at once. So, we have to be patient...predictions on getting him home are (1) "in 2004", (2) by "Dec 28th or sooner" or (3) "whenever Jack meets the above criteria". How's that for ambiguity? I thought lawyers had a hard time giving a straight answer.

The long and short of it though is Jack will probably not make his first Christmas at home. I think it'll be mid next week, so we'll postpone some of our celebrations, praise the Lord for our many, many blessings and prepare to start '05 out with both boys at home. We're keeping the tree up until then though!

This is probably for the better anyway with Coop being sick right now. This will give him a little time to re"coop"erate and both boys will be healthy.

Speaking of blessings, one of them in my life showed it's true colors today. Namely, my co-workers and the heart touching gifts they provided for the boys. Thank you from all of us...you didn't have to and we would have never expected something...but thank you so much. I made a career change two years ago because I thought this employer would provide a better platform to raise a family. That assumption has been proven a 1000 fold over the past six months. Today I found out that it's even deeper than a good platform to raise a family. . . it's really a whole other, deeply caring family! Thank you again.

So, on the night before the night before Christmas (use to be the theme of a party in my home town) we have many blessings to remember and praise God for. May all of you have a wonderful Christmas...Jack and the rest of the crew hope Santa brings you extra joy this year.

TTFN

Wednesday, December 22, 2004 4:15 PM CST

66 Days Post Transplant

From Dad

Cooper is definitely sick with his first full blown cold. Test results for the RSV so far are negative though, which is great news. He's stuffed up and just crabby. The mini-Cooper with a plug up muffler. Of course, he'll probably shake this thing as fast as he got it.

Jack has the rally cap on today! They have increased his direutics and he is peeing like mad. He's fluid down today and is starting to get back to normal. Once the fluid is gone his breathing and other symptoms will only get better.

He's ready to be transferred to the "Floor" today, but there's "no room in the inn", so he'll spend another night here at the PICU. Hopefully tomorrow he'll be back on the Floor in the tender loving care of Mom, Dad and Grandma. We'll have to start the narcotic and direutic wean again, but hopefully with the G tube and head Shunt doing it's job, it'll be faster and easier on Jack.

The prospects of a united family at home on Christmas are getting more remote, but not totally beyond the realm of possibility. I think it'll probably be more like the middle of next week, but who knows???? We don't want to rush Jack home just to meet some goal and put his health in jeopardy. All we'd end up doing is coming back here again.

Mom and I are doing much better also. Today Jack was back...smiles, smiles, smiles and a little giggling. This does wonders for us and helps let some of the pressures from the past week escape. I don't think I physically hurt anyone last week, may have been thinking that, but I don't think I acted on it. Thank God. Those feelings are totally foreign to me right now and all I can do is praise the people that care for Jack. I know it must seem as if I'm mentally unstable the way I vascilate here, but I just can't help it! Sleep and stess are diametrically opposed states and as one goes down the other goes up geometrically. Fortunately, it works in reverse also and I'm approaching a balance again.

I wrote Oprah again, trying to get Jack's inspirational story aired.

That's about it, we're set to get Jack to the Floor, step one in getting him home. I can see Jack and Cooper now playing together. I can't wait.

TTFN

Tuesday, December 21, 2004 4:21 PM CST

65 Days Post Transplant

From Dad

**New pictures posted**

I think Jack is starting to put his rally cap on.

Let me start with Coop though; We had a very long night as Cooper wasn't up to his jovial self. He was coughing and fussy and just didn't want to go to sleep. Then when he got to sleep it was toss, turn, cough, and he wasn't hungry. This of course scared the crap out of us as some of these are signs of RSV. We put Coop into bed with us and he slept well, but continued to be restless and cough. This morning Robin brought him into the Pediatrician to get him checked out. It appears that he has a cold, but was tested for RSV nevertheless. We'll have the results of that test tomorrow.

This afternoon we understand Cooper was making up for lost time and consuming copious amounts of formula and rice cereal. I think we'll be okay here and won't have to go back to the two boys, two hospital regime we were under in early August.

They have been busy changing over Jack's meds from IV to the G tube today in anticipation of moving him to the floor. He'll start with regular formula (I should say that sour milk, low fat Portigen crap, but it's nevertheless better than nothing)tonight. He's been on Pedialite for a day now and tolerating it well. He had two bowel movements last night and his abdominal girth is the same as it was immediately after his surgeries. This is great news as it indicates that his gut is probably absorbing the spinal fluid from the shunt. This was our biggest worry (or I should say still is) since if his gut couldn't do this, they would have to move the discharge end of the tube somewhere else. They typically move it into one of the big arteries by the heart, but that has never been done to a child with a heart transplant before. That is ground we don't want to explore.

Jack has finally turned negative in his in/out balance, and is starting to lose excess fluid. His weight was down a little. This too is good news as it means his systems are kicking in and starting to work again after the disruptions of twin surgeries last week. His daily chest x-ray showed more ademia and a general wetter picture than previously, but we think this will change as we go forward as these x-rays are lagging indicators.

Also, Jack's soft spot on his head is more concave now. This is a sign that the excess fluid and pressure inside his head is gone and the shunt is working. Again, a good sign. One of Jack's favorite nurses remarked last night (she use to work with a ped's neurosurgeon) that the decrease in pressure in Jack's head from the shunt was probably causing him to be a little agitated the past few days. He'll probably be that way until he gets use to the new pressures in his head. I think he's starting to get that way now, just judging by his demeanor.

We think the head surgery is having positve effects also. He is focusing more easily and has more and more little fine motor movements like Cooper.

Jack was set to move to the floor tonight, but apparently they are filled and we'll spend another night on the PICU.

It's been a tough week on Jack. Actually, it's probably been tougher on us since he's had the benefit of narcotics. We feel as if the move back to the PICU, the two surgeries and now the subsequent recovery are a giant step backwards in his general recovery. I realize that it really isn't, it's a week or so and is all for the benefit of Jack, but the very idea of being back here, increasing some of his drugs, more pumps, intensive care, etc... seems as if we're back in the first half of November again. We're just plain sick of being here and want to be home and start to get to normal again...whatever that is.

It's possible Jack will make it home Christmas Day. However, we don't want to do anything not in his interest just to make a deadline. The celebration of Christ's coming can occur anywhere.

Well, I guess this is long enough for today. I have alot more thoughts running through my head...I'll get them out later.

Jack's putting on that rally cap and we're getting him home!

TTFN

Monday, December 20, 2004 2:28 PM CST

64 Days Post Transplant

From Dad

Do you remember what you ate for supper last Monday? Jack had some portigen (stinky, low fat formula) directly into his intestines. He remembers because that's the last bit of any nutrition he had.

It's been nearly six days of no nutrition and finally . . . finally today Jack has started to receive a little pedialite through his new G tube. Understandably, Jack has been PO'd the past couple of days because of this.

These draconian measures were necessary because of his two surgeries and their timing, but it still is very difficult to watch your infant son be so mad because he is hungry. The only thing you are allowed to do is watch as he cries and fusses due to hunger pains. He’s a baby for heaven’s sake, trying to grow and heal from all these cuts.

I think Jack will be fine once he starts getting food into his stomach again. It’ll absorb the drugs that he’s on, provide nutrition and help him heal and grow. We’re hopeful that this process, reintroduction to food, will go fast and safely and Jack will be on full feeds by tomorrow. He’s set to start to receive “pure liquid love” (aka Mom’s Milk) early tomorrow. If that progresses as planned (full feeds) they’ll start to put all his medicines through the G tube. Shortly after this his IV’s and RA line should be pulled and he’ll in effect be “de-hosed”!

Speaking of the disappearance of hardware from Jack’s body, if you look at Jack today it will be the first time in his life, nearly six months now, that he does not have a tube or hose going into his nose or mouth. That’s right – his face is the way God intended it to be …and it’s pretty darn good looking if you ask me!

Other than that, Jack is doing well. He has several new battle scars on his chest and head, but all in all looks like the fighting young man we know and love. We are lucky to have such a strong, healthy son, because if he were sickly or weak I don’t think he could have made it through all of these trials. We’re hopeful of a transfer to the “Floor” tomorrow, and then he’ll be one step closer to being immersed in the love of his family and the real healing will begin.

Coopie is doing just fine. He’s still uncertain what the stuff is Mommy keeps giving him with a spoon, but it tastes okay and fills the belly, so what the heck let’s keep eating it. The cereal is agreeing with Coop also and I would expect him to go through another growth spurt soon. Last time we checked he was about 15 pounds and still climbing. He has developed a rather curious habit of wanting to be walked around. Around 8 – 9 pm each night he starts to fuss (that in itself is funny, it’s a little half hearted cry just to make sure everyone knows he’s still there) and keeps it up until someone picks him up. Well, it has to be me who picks him up, he’s decided, and I have to carry him like a little football and walk around the house with him. He loves to be held like that and take in the sights of the living room, kitchen and den. It really is a fascinating tour.

Hopefully by tomorrow I’ll be reporting that Jack’s on full feeds and on his way back to the “Floor”. Cooper is busy getting the “Crib” ready for his brother.

TTFN

Sunday, December 19, 2004 4:11 PM CST

63 Days Post Transplant (9 Weeks)

From Dad

Cooper hit another big milestone today - cereal! You betcha, a little rice cereal together with a big bottle of formula was the breakfast of this champion. He did very good, wasn't quite sure what this strange substance was in his mouth, but what the heck, it was edible, tasted pretty good, so let's swollow it. Coop's doing great, getting ready for his big brother to get home.

Jack had a good day. He had a CT Scan of his head this morning to see if the ventricals have gone down. We're still awaiting for the results, but form observation we think the swelling in his head is down somewhat. They are taking careful measurements of his belly to make sure (1) the fluid from his head is being absorbed and (2) there are no leaks or other problems from the nissan/ G tube procedure earlier.

Jack is a little irritable today from time to time, probably because he hasn't had any food in 6 days and he has had two procedures on his belly in that time! Three poopy diapers today indicate that his system is starting to work again (at least moving the right way) and they are starting to do some trial runs before they start to feed him through the G tube. Once feedings start alot of issues should be resolved with drug administrations, growth, feeling better, healing, etc...

Other than that, today was a quite day and we just keep watching and waiting for Jack to get well enough to get off the PICU and back to the Floor.

Keep it up Jack!

TTFN

Saturday, December 18, 2004 4:48 PM CST

62 Days Post Transplant (supplemental)

From Dad

It's been a good day here at the Hospital. Jack went through his neurosurgery early this morning and did very well. The Surgeon commented that this was the right decision after all, because there was pressure building inside his head, and that this should help him develop much faster. We think we've caught this early enough to prevent any brain damage.

He has done so well that this afternoon they extibated him from that damn ventilator. Jack at first was very irritated and mad, crying for about a half hour. We had to give him a bump of a sedative and he calmed down, falling into a deep, restful sleep. Immediately after the vent came our Jack's heart rate climbed into the 140's, well above their target for a "no need" decison on the pacemaker. While asleep he fell back down to 90-'s to 100's, which is to be expected but probably means further discussion on the pacemaker is needed.

Jack continues to rest. We hope that tomorrow they can remove the NG tube that is sucking secreations from his tummy and start feeding him. Once this happens I'm sure Jack will be on the road to a quick recovery. The constant watchword of course is infections and to make sure his gut can absorb the spinal fluid being diverted there. So far so good. If all goes to plan, Monday he'll be back on the floor.

Mom and Dad are feeling much better and probably won't bite if looked at cross wise. I've heard of being co-dependant before, but this is starting to cross the line. I think I can live with that though, basically when Jack is doing good, we're doing good. The same goes for Coopie.

Today was a big day for us. Thank you for your support out there and praise the Lord for another triumph for Jack.

TTFN

Saturday, December 18, 2004 10:27 AM CST

62 Days Post Transplant (Supplemental)

From Dad

Another victory for the Jack of Hearts!

Jack made it through his surgery today just fine, arriving back in his room around 10:12 a.m. this morning. The Ped's NeuroSurgeon came out and talked to us just a few minutes ago. Jack's surgery went very well. There was intracranial pressure in his skull, probably a moderate amount, and it was relieved with the shunt. So, this was the right thing to do.

Jack kept all his vitals strong and stable throughout the procedure and is already starting to wake up from the anesthesia. He has a cut on top of the head, the back and at the bottom of the stomach. This is the route of the drainage tube and the shunt itself. Jack also got his first haircut of his life, something his Mommy was surprised and disappointed to see. However, he has genetics on his side here, since both Mom and Dad have thick, thick fast growing hair.

The Surgeon reminded us that this is the beginning of the care to correct this problem. The next few days we'll have to make sure Jack's gut can absorb the extra fluid being pumped into it. If it cannot, then that will present problems as to where this fluid should go. The next few weeks we'll have to watch for infections. Finally, for the rest of his life we'll have to watch for obstructions or malfunctions to the shunt. All of this is managable, just means we have to watch Jack closely physically and behaviorially.

There was pressure on the brain, however, probably not alot and not for a long time. Also, Jack is an infant, so his brain should make up for any injury as it matures naturally. Finally, genetics play into the IQ equation as well. So, we're hoping Jack inherits our stubborness and continues to fight and that God blesses him with smarts greater than the sum of his parents.

Another surgery down. We hope to yet extibate him today and put some food down his G tube. Maybe, if things go well he'll be back on the floor on Monday.

The Surgeon said that he has seen this surgery make babies who previously refused to walk, walk within 24 hours. He expects Jack to begin to flourish after this.

Thank you Lord, please continue to bless our little boys.

TTFN

Saturday, December 18, 2004 8:13 AM CST

62 Days Post Transplant

From Dad

They wheeled Jack off at 7:50 a.m. this morning. He looked good and I cross examined the surgeon -- no alcohol last night and his hands were steady. Now we wait. I'll post as things go by.

Cooper had a very restless night, up a couple of times hungrey and just crabby. He knows somethings up again. He's so cute and such a good boy.

Jack is a strong boy and he'll get through this with no problems. He'll be back up here and we can start to get him in the recovery and growth mode again soon.

I asked God to look after Jack again today, I'm sure they will.

TTFN

Friday, December 17, 2004 3:40 PM CST

61 Days Post Transplant

From Dad

Cooper is dressed in his Sunday best to come and visit his brother. He's in a nice knit sweater, blue jeans and his timberland shoes. He's managed to urp on this get-up only once since he's on special behavior to visit his brother. Jack on the other hand is in his birthday suit, except for a diaper.

Coop is a very funny little boy, he was so happy to see me as I walked into Jack's room that he smiled form ear to ear and let out a little gas from the bottom end. We played and talked to his brother and then after a while he got tired and wanted to be held by Mommy. Coop quickly fell asleep in Mommy's lap, safe and secure, the way things ought to be.

Jack is holding steady as we prepare for tomorrow's surgery. Everything appears to be a go for tomorrow morning so far, with Jack going down to the O.R. around 8 a.m. Anestesia will be administered and as soon as Jack is fast asleep in la-la land (not Los Angelos) they begin. Not counting going into or out of sleep, the procedure should take between an hour and hour and half. The surgeon said though, considering Jack's special circumstances (transplant and immunosuppresed) it may go slightly longer as they'll be very careful and clean. Infection is the watch word and it's more likely to develop, if at all, within the first couple of weeks after the procedure.

Jack will come back up to the PICU afterwards and probably be extribated soon thereafter. If everything goes right, he should start to drain the excess fluid from his head in realitvely short time. Provided Jack is still okay, we'll begin feeding him through the G tube later tomorrow also. Our hope is to get him off the PICU by Monday, back to the floor and back to our care.

On the floor the plan is for us to take over virtually all of his care...administration of drugs, diapers, etc... Two issues remain to get Jack home; (1) getting off an IV dose of bumex (diruetic) and onto an oral dose and (2) the pacemaker. It's possible all of this can be taken care of by Christmas and we'll be ready to take him home. Of course, we don't want to push anything that may jeopardize Jack's long term health just to make a deadline. If we need be, we'll postpone the Corbo family Christmas a week or so. We did that for Halloween and Thanksgiving, we can do that for one more holiday if need be.

I've decided to hell with trying to subdue my emotions here. I can control them in front of Jack just fine and by the time Jack and Cooper are old enough to read this, he'll understand a little better what's happened. So, since they'll probably kick me off caringbridge if I use all the adjectives I want to, let's just say Robin and I are very frustrated and mad, at the situation and at certain Dr's. To put it mildly, I'm searching for a target. Some of the thoughts that are in my mind right now could be very valuable material for a gangster movie like Goodfellows or the Godfather Part XXII. I'm doing a pretty good job projecting the anger onto inanimate objects so far and have managed not to hurt anyone...

When we get back to the floor I'm going to put a sign out saying Papa Bear is in his den, he growls, snarls, has known to bite and is afraid of only one thing. Another sign would say Mama Bear is in her den taking care of her cubs, she's cute and likes to cuddle with the cubbies, and is the only thing Papa Bear is afraid of. I hope people will get the message.

I'm bringing Jack home, come hell or high water, I'm bringing him home!

So tonight I'll say my prayers, kiss Coopie good night and get up early in the A.M. to walk with Jack down to the O.R. We'll stay with him as long as possible and then meet him up in his PICU room again. Then we'll begin to work on the checklist to get him the hell out of this Hospital and home.

As a former Commander in the Army I direct all subordinate commands, leaders and foot soldiers to unleash the Prayer Bridgade tonight and for the next couple of days, until Jack comes home safe and sound. God knows about Jack and has blessed him many, many times. I'm very confidant He'll do it again!

TTFN

Thursday, December 16, 2004 8:11 PM CST

60 Days Post Transplant

From Dad

Today we spent time seeking a second opinion from a Neurosurgeon at a different hospital. We felt much more assured in our decision after this conversation and then had another conversation with the Neurosurgeon and the Cardiologist at the U of M.

Our emotions are a little more subdued now, but still have high levels of frustration sprinkled with a little bit of anger. However, Robin and I remembered today, through our travels, that our emotions mean little to Jack's prognosis and health. In reality, we need to remain positive because he feeds off of us. Easier said than done, yes; and we frequently let our shield down and vent, but something we have to keep a watch out for.

Anyway, here's the long and short of Jack's situation from what we've been able to gather today talking to various Dr's. Shortly after the transplant Jack had built toxic levels of cyclosporine in his body primarily due to his kidney's shuting down and the dosage not being properly calibrated yet for his body. This caused a seizure which we believe led to a slight bleed on the brain and/or as a result of the surgery he was on a by pass machine which can cause these subderal bleeds (a small bleed in teh back of the head). We think this caused or may have contributed to a blockage of the natural drainage in his head (of spinal fluid). This in turn has caused pressure to be building in his head, evidenced by enlarged ventricals. This was first noticed during a CT Scan back after the seizure in October. A CT Scan yesterday showed the ventricals have gotten bigger over time suggesting an increase in fluid and more pressure in the head.

The good news is that Jack is an infant. His head bones have yet to fuse together, therefore the increase pressure in his head has not caused too much pressure to be placed on his brain. His brain is more than likely okay and there should be no long lasting effects on it.

The solution? To put a shunt in the ventricals in the brain and snake a tube under his skin around the head, down the neck and into (around) the abdominal cavity. The spinal fluid will drain through this tube into the cavity and be absorbed into his body.

This apparently is not that uncommon a procedure as you may expect. Especially in premature babies. The dangers? Obviously it's an operation on the head, close to the brain. But this is a relatively minor concern because of the placement of the shunt in certain benign areas of the brain. The real danger is infection...and in Jack's case being immuno suppressed increases the ramifications of that danger. Also, since he just had an operation on his stomach, the danger of bacteria leaking from the cut they made in the stomach is present. All of these dangers are managable and can be mitigated. The only other complication is that the tube could plug at some time and need to be fixed through another operation. Jack will have this in him for the rest of his life, more than likely as it is sometimes not worth it to go in and take it out.

The benefits are obvious, it'll save his brain and quality of life. The choice of doing nothing and hoping that it heals itself, which it could over time and the need for the tube would go away, is just too dangerous to take. Consequently, sometime this weekend, probably on Saturday, Jack will have this surgery performed.

The procedure itself should only take an hour or so and they say it does not make our goal of Christmas Eve unreachable. We don't know what to think of that right now...

Jack today is doing fine. He's still in the PICU on the ventilator (which they'll keep him on until after the shunt procedure). He'll probably come off of it after this procedure in short order and then be back on "the Floor". In conversations with the Cardiologist this increased pressure in the head could be the cause of some of Jack's wean issues from narcotics amongst other issues.

This is scary; really we're more scared of the ramifications of this surgery than the transplant itself. The Cardiologists have stated that we shouldn't think this way, that this is a minor surgery and he should be just fine, and actually start to flourish afterwards.

Jack, with his spirit, will carry the day. We have been very upset but continue to trust the Lord has a purpose for all of this.

So we pray a little harder that this procedure goes well, and there are no infections and that his brain is just fine.

TTFN

Wednesday, December 15, 2004 9:23 PM CST

59 Days Post Transplant

From Dad

There are too many emotions running through Robin and I right now to adequately memorialize what we're feeling. Today was a day when that 2x4 that hit us on the head on July 30th came back to us again. This time we were able to duck but it still hit us on the back swing.

Because most of what I'm feeling right now is raw anger and frustration, I'll try to stay to the facts. Two issues - first, Jack was having a hard time peeing today. It turns out that he has an elevated level of one of his immunosuppresant that at this level shuts the urine factory down. This happened because they had to go to an IV dose instead of an oral dose of this crap. The dosage has been changed and he is starting to pee again. This probably does not change the "no-pace maker" decision, but after today I think there's a conspiracy to keep Jack in the Hospital forever, so I won't put any money on that bet yet.

The next issue was Jack's head ultrasound from two days ago final came back. He has elevated fluid on the brain. They did a CAT scan this afternoon and noticed that his ventricals into the brain were enlarged - from the already enlarged reading back in October after the transplant. This suggests his brain (head really) can't adequately drain the fluid up there. The remedy - a shunt and drain into the stomach. That's what they recommended. Another flippin surgery, four to five days recovery time, risks of infection and a plastic shunt and tube in his head for the rest of his life. Apparently this is a common procedure, done 4-5 times a week at the hospital. I almost shoved his stethoscope down his throat when I heard that just because that's a common thought in my mind now a days.

Anyway, that's where we sit. We get a second opinion tomorrow from and outside neurosurgeon.

Too many thoughts right now to keep going. I'll save that for another day.

Please pray for Jack.

Please.

TTFN

Tuesday, December 14, 2004 6:25 PM CST

58 Days Post Transplant

From Dad

Cooper is so funny. Apparently last night Cooper kept fussing about everything, especially getting more food. Around 1 A.M. Robin was just worn out so she put Coop in the Pack-n-Play next to our bed. (I’m at the Hospital with Jack by the way.) Coop had just finished a bottle downstairs, so he can’t be hungry right? Apparently so, because within a few minutes he is quiet and Robin falls asleep. A couple times during the night Coop does the same thing….fuss, fuss, fuss…Robin sticks a bottle into the Pack-n-Play, realizing that he won’t finish it because he can’t be that hungry, but at least he’ll sooth himself to sleep. This morning Robin peaked in the Pack-n-Play and to her surprise, here’s Coop spread eagle, sound asleep and surrounding him, like a drunken sailor, are all these empty bottles. Coop awoke shortly afterwards and just smiled at his Mother as if to say, “thanks I needed those last night, do you have some more?”

Robin was in a rush to get to the Hospital though, since I called her about 6 AM telling her that they decided to take Jack down to the O.R. a little earlier than we thought. Actually, they started to get him prepared for the transfer from “the floor” around 3:30 A.M. (so I didn’t get much rest either). Jack was in the best mood. We played “so big” on the way down to the O.R. and he was just giggling. I felt as if I was deceiving the little guy, but at least he was happy going into it. We were in a staging area until about 8:30, during which time Jack kept thinking of reasons not to have the surgery…poop, pee, cry, drop his oxygen saturations and look too cute to put a knife to. Well, eventually he fell asleep only to awaken moments before being carted off. He awoke in time for Mommy to see him as she made it to the U in the nick of time.

We waited, waited, waited, waited. It was in the same waiting room as we were in during the heart transplant surgery. However, this time we didn’t have anyone coming out every hour to give us an update. Finally about 1 p.m. one of the volunteers must have seen that I was ready to explode so she called into the O.R. to get an update. Thank you, cause they called back and said everything was going good, they just had a delay getting started, and the surgeon would be out to talk to us soon as he was just closing Jack’s stomach up. The Dr. came out shortly afterwards and said Jack was a trooper, the nissan and G tube went fine and and AND he didn’t drop his heart beat during the entire surgery. We went back upstairs to the PICU, Jack’s old stomping grounds, and saw our little guy. He was of course knocked out from anesthesia and had tape all over his body. It looked like he just had an operation done to him – dah! Anyway, the nurses cleaned him up and he will stay in the PICU for a day or two. Of course it was like homecoming as all his old Dr’s and Nurses had to come over and check him out…after all he’s a TV star now and he’s grown so much. One last thing, right before we decided to leave (to take advantage of 24 hour nursing again and get some sleep!) I put Jack’s mobile on his crib. Remember Jack is knocked out with anesthesia and sedatives for the past 5 – 6 hours. Jack senses the mobile and open’s his eyes wide to look at it! He loves that damn thing!

Anyway, this was a hugh step. We’ll be able to feed him into the tummy now. He won’t be retching from the wean and he probably won’t need a pacemaker! After Jack recovers from this the only thing holding him back from coming home are (1) Mommy and Daddy getting some training on feeding through the G tube and doing the meds and (2) him coming off the bumex diuretic, allowing his one remaining RA line to be pulled and no more infusion pumps. I think he’ll make it in time for Christmas!

It was a good day. I’m home now and plan on spending some time with Cooper. I’ve missed him so much these past couple of days.

Thanks and keep up the prayers, Jack can do it, he can make it home for Christmas!

TTFN

Monday, December 13, 2004 8:17 PM CST

57 Days Post Transplant (Supplemental)

From Dad

Jack had a hard day today coming off some of his narcotics. He and Mommy spent the whole day working through some of the pain and uncomfortable feelings. Then later in the day Jack started to feel better and is back to Mr. Smiles.

Today some decisions were made. These are issues that have been hanging around for some time, we knew that eventually they'd come up and we'd have to be prepared. First, Jack had his head ultrasound today. As I mentioned earlier, one of Jack's Cardiologist wanted to make sure that his head size wasn't abnormal, thereby suggesting swelling of the brain. The results aren't back yet, but I think things are fine. His head is the same as Coop's and Jack is doing pretty much the same things as Coop, so he should be okay neurologically speaking. These tests though always bring anxiety to us as parents.

Next, Jack is scheduled for his nissen and G tube tomorrow morning. Mom had to sign a consent form for our son to have another procedure done to him. I know we're over a dozen of these so far; fortunately, this one is much less in stature and scope than some of the others. So, tomorrow morning they'll stop Jack's feeds and around 8 A.M. they'll cart him down to the O.R. They'll put him under anesthia and go into his stomach and perform the nissen. This will prevent him from having such bad reflux. At the same time they'll put in a G tube for us to feed him directly into the stomach. These issues will allow him to come home and allow for more and better nutrition leading to growth. Through growth he'll be able to wein off the narcotics easier and reduce the need for some of the other drugs as well.

The unfortunate thing is that he'll have to be reintibated for this procedure and may be on the vent for a couple of days. Also, his feedings will be interupted for a couple days as well. He'll be traveling back to the PICU for this time period, so watch out nurses over there --- Jack's back in town!!!

Also, during this procedure they'll be testing Jack's heart response while not being paced. If he can maintain his rate they'll consider his heart strong enough and he won't need a pacemaker.

I guess these are all necessary steps to get Jack home. Unfortunately some times it seems as if we have to take a step backwards to go forward. Oh well, it's worth it. Both Robin and I feel sometimes that we can't wait to get Jack home just so people will stop picking on him with all these damn tests and procedures. Of coure we understand the reasons for all of this, but as parents we are just tired of someone else always bothering our boy.

Did you see Jack on TV last night? How about that great picture of Cooper in his NBA outfit? They seem to eat up the camera. We think WCCO did a great job and really appreciate them telling our story, sharing our joys with everyone. Also, Corey Withrow's comments on Jack immediately afterwards on the Rosen's Sports Wrap Up were great. Thanks Corey, Jack literally looks up to you.

Jack and Cooper's story are inspirational if you ask me (I'm a little biased) and I hope others have learned and had their faith restored and strengthened through it. I know I have. I just look at these two guys and see nothing but hope, strength, love and jest for life in their eyes. It's impossible not to get caught up in their zeal for it. Anyway, thanks WCCO and I hope people visit the WCCO website to see the video stream and article on the boys. We're hoping that if Jack makes it home for Christmas, they'll come back out to actually see Jack in his house.

Well I should get going. I unfortunately did not get to see Coop today so I can't report on him. Robin and I went to dinner though and couldn't stop talking about that little guy and the funny things he does. This morning he woke up in his pack-n-play this morning just cycling, cooing and watching his mobile. Mom peeked in and he looked at her laughed and gave her this big smile. He knows how to work it, because within a few seconds Mom was holding him and he got to sleep in the big people's bed again. Exactly what he wanted!

Sorry, got to go, I guess the Bare Naked Ladies are performing next door to Jack's room and I have to go check it out.

TTFN

Monday, December 13, 2004 8:46 AM CST

57 Days Post Transplant

From Dad

What a wild weekend, it's hard to keep up my postings with this schedule, but let me bring everyone up to date.

Cooper has blown by two major milestones this weeked, first he has learned how to vocalize his emotions (other than crying) by giggling uncontrollably when he plays with his Mother's pony tail. Second, he has learned to roll over, much to his surprise. The little guy is just doing great.

Jack had a rough Saturday night as the narcotic wein was a little too fast for him again. He and Dad were up all night long dealing with it. I know a few weeks ago there were concerns over Jack's weak lungs --- not anymore. I think Mommy could probably hear him crying that night. They have went back up to the dosage level from Friday and he is now fine. We'll attempt to wein again later this week.

Jack's TV career continues to flourish, having two interviews appear on WCCO on Sunday. The first was a follow up by Esme Murphy where they showed how well Jack was doing and recovering. All Esme could say is "I can't believe how cute he looks". Every time she said that Jack flashed her his famous smile, cooed, and turned his big blue eyes slightly making everyone laugh. I've found that Jack does this when women are present, but has more of a deadpan look when men are around. Uummmm - could this be signs of trouble for those teenage years?

The interview was aired at 10 last night and then again this morning. We are hoping to get Jack home Christmas Eve and I think WCCO will do a more in depth interview at our house at that time.

Jack's second interview was aired immediately afterwards on "Rosen's Sport Sunday". Corey Withrow, starting Center for the Vikings, talked about the disappointing Viking loss and then talked about his organization "Corey's Kids". He said he visited the U Hospital earlier and met Jack. Jack and Corey apparently had such an in depth conversation going that Corey ran late and didn't have enough time to visit other children. They showed the picture that's on our website of the two and Corey kept commenting on "Jack's infectious smile".

I think there's a theme going on here with those boys and their smiles.

Jack has a head ultrasound scheduled today. One of the Dr's commented that Jack's head is growing pretty fast and she wanted to make sure there is no swelling of the brain. I told her, being a Dad who loves to measure things, that I measured both twins' heads the other day and Jack and Cooper are exactly the same in size. She seemed satisfied but we'll nevertheless get the ultrasound and make sure everything is okay.

I also petitioned to get Jack's nissan and G tube surgery moved up to Tuesday. Jack has such a hard time with his meds in the morning with reflux. Also, since he has no food in the tummy to absorb some of the med's I think being able to put some good food in there directly will only help. So let's get on with it. This coming up Saturday Jack's 6 week protocol on the low fat formula will be ending. I think we'll be able to put some good food into him then. Jack has gained more than a pound the last week and now only has a 1445 gram difference from his brother (about 3 pounds).

That's about it for now. Thanks for the prayers, keep 'em coming and TTFN.

Sunday, December 12, 2004 8:12 PM CST

**Watch WCCO Sunday night at 10 p.m. and Monday morning to see an update story on Baby Jack and Cooper!!!!; if you're not in the Twin Cities, check out www.wcco.com after the broadcast, just search for Jack Corbo. Videos of a smiling Jack, with Daddy and Grandma Hicks will appear.***

Saturday, December 11, 2004 6:48 PM CST

55 Days Post Transplant

From Dad

**Watch WCCO Sunday night at 10 p.m. and Monday morning to see an update story on Baby Jack**

I'm sitting here typing this with Cooper in my lap watching the bright colors. This will probably turn him into a computer nerd real quick. Oh well, those nerds end up running companies like Microsoft and can keep their parents in the best threads.

Just kidding, I came home earlier today and spend some time getting chores done and with Coop. Coop and I went out and ran a few errands together, just the boys! It was fun.

Coop is doing just great, he is growing and learning and starting to explore his world a little more. Today we heard him giggle, out of control for the first time. It was so cute. He also has a new chair, called a Bumbo, it's from England. It's a little foam chair that allows his to sit up, supporting his neck and back. We have a couple of pictures and it's like a little, old man sitting there watching TV on his favorite love seat. That's our Coop.

Jack is doing good. He had a good night, except for the 8 AM meds, which are the most of the day, where he upchucked the medication a couple of times. The problem is these are harsh medicines that go directly into his stomach. He is receiving all of his food directly into the intestines, so his stomach is empty. It's just a little too much for his tummy to take.

Other than that, he is doing great. If you look at him he is starting to fill back out. He's gained a whole pound of good weight this week and it shows. Jack tips the scales at 11 pounds 2 oz now, only 3 1/2 poubds behind his brother. One of the Cardiologist couldn't get over this, considering everything this boy has been through and he just keeps growing.

Jack is scheduled for the G tube and the "essian" (sp?) procedure next Thursday. This is a procedure where they'll wrap part of his stomach around his esophagus thus preventing reflux. At the same time they'll put in the G tube for us to feed him directly into the tummy while at home. Jack will continue to work on eating through the mouth, but to assure he gets all of his food, we'll supplement what he doesn't eat through the G tube. This is a temporary thing until Jack outgrows it. The Speech Therapist said kids like this often go right past the bottle and directly to cereal and the sippy cup. Knowing Jack, he'll skip that also and have a burrito for lunch.

The issue of the pacemaker is still up the air. We're not sure what's going to happen. I think if Jack can make it through next week's procedure without the help of a pacemaker, then he won't need one. The issue is Jack's heart makes enough cardio output now, but it's unsure if it will when he gets sick, especially with a suppressed immune system. However, they said if he can make it through a minor surgery without being paced, then he can make it through almost any childhood sickness as well. (Except of course chicken pox, which is very scary for kids like Jack.)

We had our first drug class on Friday, teaching us about Jack's drugs and their administration. This is a sure sign that we're getting ready to come home. Six months ago the prospect of taking these drugs, with some of the side effects, would have been major trauma. Yesterday it was a boring lecture we had to sit through, having heard and come to terms with most of the information already. We also met Jack's personal pharmacist, if that doesn't tell you something.

Things are fine. I'd give us 80dds of having two Corbo boys under the tree on Christmas (not counting me of course!). Nothing would make Mommy happier than to have all of the men in her life under the same roof on her most favorite holiday. We'll all get up in the morning, have a nice breakfast and get dressed in our best (if I still fit into them) and go to church. Robin loves getting the boys dressed up for these things. I will finally get to have a little self indulgence and feel proud of showing both boys off at the same time. My two heros.

What a great day that will be. Celebrating the birth of Christ and having the whole family together at last.

Keep praying.

TTFN

Thursday, December 9, 2004 6:36 PM CST

53 Days Post Transplant

From Dad

Cooper had a little PT today to help him with his torticoulous. He seems to be progressing just fine and combined with yesterday's report from the pediatrician (14.5 pounds) we are very happy. He has climbed out of the premiee charts and on to the regular chronological age charts. Albeit he's only in the 25% range, he's doing great and only getting stronger. It's still my prediction he'll be at least 6'2" and over 225 pounds of pure muscle, holding several degrees with a genius IQ and an aurora that'll make girl's go crazy (watch out for his Mother though girls!). Of course I'm a little biased.

Jack had a rough day. His second part of the suck/ swollow test didn't go as well and he has significant reflux. It was a very stressful experience for Mom and Jack and while we don't know for sure, it appears he'll need a "G" tube and maybe a slight operation to help him with the reflux issues.

Jack is quite the celeb though. Apparently we have nurses fighting over taking care of him here at the Children's Center. This follows the chain of broken hearts he left at the PICU (here at the U) and NICU/ ICC at Children's Hospital. Also, while being carted down the hallway today for his test, he had strangers come up to him saying "oh, you must be Jack, I've heard so much about you, especially your smiles". Those kind of comments of course make his parents feel great. Jack responds with his trademark and gives them that famous smile.

A couple more changes to his drugs today brings the total number down to 14 drugs and 42 administrations in a 24 hour period. This is getting closer to managable at home. Tomorrow, Mom, Dad and Grandma attend a drug administration class to prepare for his drug regime at home.

We had a very interesting conversation with one of Jack's Cardiologist last night. This particular Dr has been with us ever since that day we first learned of Jack's heart problems at Children's Hospital. A prior conversation we were having with the Speech Therapist brought up Jack's "heart attack". We really never addressed the particulars of that incident since, mostly because we were too busy with other things but also partially because we just didn't want to think about the trauma of that night. Anyway, in our long conversation we asked her about the "arrest". She stated that Jack never officially had a "heart attack", in that his heart continued to beat the whole time. He continued to have blood prefusion to all his organs, especially his brain, and generally emerged from the incident rather well. What Jack did have was wildly fluctuating blood pressures which was exasperated by the fact that they couldn't continiously monitor it with the earlier loss of the CVP line.

This made us feel better since our largest concern was that there may have been an interuption of oxygen to his brain. Even if this did occur and damage did result though, they have assured us that at Jack's age his brain would compensate for any damage and he would mature normally once he was healed. A couple days after Jack's "arrest" one of the nurses figured out that his lines, from all the infusion pumps, weren't optiminally laid out and/ or were combined with other drugs in a less than perfect manner. (I still don't quite understand what she did). Anyway, being the plumber that she is, she redid all his lines and got it perfectly. He was then being administered constant doses of his heart medications, as before he was probably receiving none followed by large gumps at it when the lines cleared. This of course would explain the out of control blood pressures. Also, after the nurse straightened out the lines his blood pressure has been rock steady.

We told the Cardiologist that we must have a strong son since he has emerged through all of this in realitively good condition and with such a good spirit about him. Her only reply was "no, your son is not strong, he is very, very strong". That's all we needed to hear.

TTFN

Wednesday, December 8, 2004 6:10 PM CST

52 Days Post Transplant

From Dad

Cooper got his RSV shot today and did just fine. He was "cycling" (kicking his legs) against the protective paper on the examination table. He likes to do this, especially when it makes noise. Unfortunately, the nurse came in then and had to stick him with a shot. Coop didn't like that and started to cry, but with about 20 seconds of being held and kissed by his Mom, he was ready to cycle again. All smiles and giggles, such a good little guy.

Jack also had a great day. He got an A+ on the first half of his suck/swollow test today. They strapped him into a seat and put him upright. Then they put various amounts of liquid into his mouth to see if he would swollow it and not asperate. He did great! The sucking part doesn't seem to be as strong, but we still have some time to work with it. They are leaning towards putting a tube into his tummy for us to feed him with though, just in the beginning, but still not sure which kind yet though.

Jack also is really progressing with his pace maker. He has been off of it for the past 16 hours and has been maintaining a heartbeat around 120 bpm. If he keep this up, especially during the procedure to put in the tube, then he won't need a pacemaker!

A good day today.

I continue my watch over Jack here at the Children's Center tonight.

TTFN

Wednesday, December 8, 2004 7:10 AM CST

51 Days Post Transplant

From Dad

I'm a little late posting this entry, but on Tuesday (yesterday) Jack had an alergic reaction to one med that he's on. A few days back, shortly after moving to the Children's Center (a.k.a. "The Floor") we noticed that every time Jack was given one of the antibiotics (a prophylactic dose) he would gag and throw up. So we convinced the Dr to change it. She went to a med that she hasn't used in a while and it turned out to be worse. Jack got his first dose Tuesday morning around 4 am. I left for work around 8 am and he was doing fine. Robin got to Jack's room about an hour or so later and he was beat red, covered in hives. They loaded him up with Benedril and he slept most of the day. The hives quickly disappeared and the new med was DC'd! We'll go back to the original antibiotic and see if that really was the cause of the gag, or if it was just the fact that he doesn't have food in his tummy and all these meds that are going there are making him gag. (Note, Jack's food is currently going straight to the intestines as are most of his drugs. He does receive some meds down the NG tube though, and these are the ones that seem to cause the trouble. Of course, I think I would probably gag also taking those meds on an empty stomach.)

By the evening Jack had fully recovered and was his happy self again. Because of logistics this week (Cooper has Dr appointments and his own PT) I went home and Grandma stayed with Jack last night. Consequently, all of us were at the Hospital together last night for a few hours. Jack and Cooper played together. We tilted Jack's bed up a little so he could see and then put Cooper (his head) at the foot of the bed, right below Jack's feet. It was a Corbo twin stack, with Jack on top and Coooper on the bottom. We did this because we tried the side by side thing and all Coop could do was smack his brother in the face when he stretched. Jack quickly got his brother back though, when they were stacked he started to kick his brother in the head. Coop didn't seem to mind, he probably thought it was a little head message considering the strength behind Jack's kicks now a days (but just wait until Jack is stronger!).

Yesterday was a good initiation into the world of "father of twins". Early yesterday while changing Jack's diaper he decided to pee on me. Then last night Jack had an "explosion" in his diaper and Dad had to clean it up, getting residue all over his hands. Later Coop decided that while being held by Dad it was a good time to up-chuck on him. I had it coming and going from both boys.

Today Coop goes to the Pediatrician to get his monthly RSV shot. The poor kid. Mom is also armed with about 20 questions to ask the Dr.

I wrote a draft of a letter to the donor family. Robin and I will kick it around some and then send it out later.

TTFN

Monday, December 6, 2004 8:56 PM CST

50 Days Post Transplant

From Dad

**New pictures posted**

Jack had a pretty eventful, yet boring day. His DT's are diminished and he is working hard on the eating and swallowing part of his life. The plan is to continue to work on this and later this week he'll have a swallow test completed to see if he can avoid the nasty "G" tube into the belly.

On the respiratory front everything is going fine. They discontinued some of his therapy and his lungs seem to be operating just fine right now.

The issue of the pacemaker is still up in the air.

Jack actually lost weight today, primarily because his breathing is using most of his calories and his loose stools. I'm a little worried that he's dehydrated (especially as he laps up sugar water from a sponge) but the Dr's are more worried on a too quick wein from med's for his kidneys. They fear that going too quick, especially with Jack's history to quick weins, might push his kidney's into shut down mode again. Nevertheless, we were able to DC one of the diuretics today and hope to start to space some of the others out tomorrow. In total, were down to 17 meds and 49 administrations of them during a 24 hour period.

I'd like to comment on Coop, but father and son did not see each other today. I hear Coop is behaving rather strange and I'd like to think it's because he misses his old man. I'm a little off center today also, going through Coop withdrawals myself.

Keep praying, we're getting close and can use the push to get Jack home.

TTFN

Sunday, December 5, 2004 3:58 PM CST

49 Days Post Transplant (7 Weeks)

From Dad


Jack is having a much better day today than last. He still has some DT's from the narcotic wein, but going up on them the last few days has helped. The idea is to reach a level of stabilty, void of any of the effects of withdrawl (vomiting, diarhea, et. al.) and then start a plan that will probably take months before he is totally off of them.

Jack got his 2nd (or 3rd?) RSV shot today and while it was painful to see him cry with the IM injection, it was reassuring that he was feeling things and reacting to them the way all kids do.

Cooper is having a hard time putting himself to sleep for a nap today. He is getting pretty cranky and I think just has his schedule all tied up in knots. I think the shuffling of me, Mom and Grandma between here and the Hospital has all of us a little confused on who is where doing what.

Jack is also making progress on the suck/ swollow end of things. He is taking sugar water from the end of a Qtip and loving it. He sticks his tongue out and is sucking on it. This is a giant step!

Jack is still on 18 drugs (administered NG, NJ or IV) and with the frequency some are given it computes to 51 "administrations" during a 24 hour period. They have tried to bunch these to make them a little less intrusive and hard on Jack, but still it's a lot for a little body to handle. Let alone the logistics involved with this, combined with various therapies (speech, physical, RT, occupational, CV, et. al.) you can see where he is constantly being interupted by people. We're constantly challenging the Dr's to see if we can go down on frequency or DC some of these all together. It takes time, for a set back with some could be dangerous. So, while we will not have to adminster drugs to Jack 51 times a day when he comes home, we will probably have a schedule to keep. Of course, this will all diminish over time and hopefully be just a couple of pills a day by the time Jack and Cooper are playing Little League.

That's about it, stuck in the trenches here but loving every minute of it.

TTFN

Saturday, December 4, 2004 8:38 PM CST

48 Days Post Transplant

From Dad

Jack's DT's reached an apogee today. Late last night and early this morning he was having liquids escape from both ends of his little body. The result was dehydration and a loss of magnesium and potassium in his body. This in turn caused him to develop a slightly irregular heart beat.

The Cardiologist evaluated the situation and thinks that his narcotic wein was too fast the past couple of weeks. His body has had some of these drugs administered to him since early August. As a result, there is considerable residual built up in different fatty deposits in his body. During the early part of the wein the body just pulled from these reserves, however the last couple of days this reserve must have been depleted and his body didn't like it. So, we've had to go back up on some of his sedatives and narcotics and will start the process over again as soon as he is stabilized. This will probably be months long and consequently he'll come home on some of these drugs.

This may sound like the first couple days on the Floor has been a hard experience. False, anything but. It is a little hard to get used to, but for the first time we are taking care of Jack. It's almost like being at home, except with the assurance that nurses and doctors are a shout away and the PICU is only 150 feet away if needed. It's been a great experience. Jack loves it. He loves spending time with Mommy and Daddy alone.

During this time we've noticed a number of details on Jack's behavior that are exactly the same as Cooper's. You'd almost think they were twins! It really is uncanny. The little smirk. The little sigh after a big breath. The desire to watch the mobile. The little cry and whimper when they want to be held. The exact same cry when they want to be changed. The same expressions on their faces, especially when they're sleeping. Jack is a little smaller than Coop, but I've already caught myself saying Coop when talking to Jack and the other way around as well.

We have been working particularly on Jack's eating ability. We are constantly taking the lessons from the speech therapy folks and trying to get Jack to use his mouth to consume. He has an oral aversion to anything in his mouth due to being on the ventilator while waiting for his Gift Heart. We don't want him to end up on a "G" tube when he comes home (one directly into the stomach in which we'll pump food into). Today he has been sucking sugar water from a Q-tip and mimicking Mommy stick out her tongue. These sound like small, funny little things, but they are huge first steps to being able to use the mouth again and coordinate his sucking and swallowing reflexes.

As I write this Jack seems to have plateaued on the DT's. He hasn't had diarrhea is a number of hours and has only vomited once in the past six. He isn't shaking all over and his breathing is better as well. This will get better and we will be poised to have a break-through week next week.

I've said it before, but I'll say it again, our other son, Coopie (affectinately called at times), is probably the funniest person I've ever met. God knew what he was doing when he sent him to us. He already knows how to manipulate Mommy with a smile and glint of his eyes. He loves to "cycle" (kicking his legs) and always has to be touching someone. He's a good boy and we love him dearly.

We're feeling much better as well. Yesterday seeing Jack in the throws of the DT's was not a pleasant experience. I started doing the "ready, fire, aim" routine at a number of nurses and Dr's and now feel like somewhat of a fool. Oh well, stress and lack of sleep are my alibis now a days.

I tried to start the letter to the donor family this week. I just don't know where to start. How do you thank someone for such a gift? How can you express what this gift means to you after thinking about it for a minute, the trials and tribulations I complain about are minute compared to the emotions this family has had to endure, and yet, they still found a way to see through their grief and make such an unselfish gesture? Words seem inadequate to express my gratitude, but it's the only way I can except of course to sing their praises to God.

TTFN

Friday, December 3, 2004 8:14 PM CST

47 Days Post Transplant

From Dad

The first day on the floor was challenging to both Jack and his parents. Jack had a great night, however, around 7 a.m. he started to experience rather severe withdrawel symptoms from his pain killers and other narcotics. This included periods of higher blood pressure, rapid breaths, sneezing, vomiting and explosions in the pants. He was put on the "Finigian" scoring system to monitor his withdrawels and to help develop a better game plan to get him back grounded again.

This is to be expected we were told.

Nevertheless, today presented problems to Mom and Dad both in terms of getting use to a new care environment and in simple logistics. 24/7 care away from home with another infant to care for is going to be difficult, even with Grandma to help, however, we cannot imagine leaving Jack alone in that room. How would he feel if he woke up and no one was there? Let alone, he got into trouble and no one was there to do anything?

Cooper is doing fine. He spent the whole day with his brother. The twins didn't really interact, but they did stare each other down. Cooper took the opportunity to eat in front of Jack and I think Jack got a little mad. Of course, we thought this was a good thing. We need to get Jack eating through the mouth soon, otherwise, as we found out today, he may have to go home with a "g" tube for feeding. This is a tube directly into the stomach that we'll have to administer food through an infusion pump. We'll have to do that at home until Jack learns to use his mouth again.

The fact that we just learned that this is "the plan" about sent us through the roof. One of the cardiologist told us, which incidentially was the first time she's spoke to us since the transplant. This apparently was part of the plan from the beginning. Of course, why tell the parents, they certainly aren't part of the medical team are they???!!!! I'm still a little hot under the collar about that. We'll make due and it's a minor inconvience compared to the peaks Jack has climbed so far.

Tomorrow hopefully will be a better day for Jack. Hopefully we'll get his DT's under control and start working on his feeding issues. We're adjusting to being more responsible for all of Jack's cares and we'll make the logistics work somehow as well.

TTFN

Thursday, December 2, 2004 8:00 PM CST

46 Days Post Transplant

From Dad

Well my cold caught up to me last night and I crashed and burned. I had to pop in and out to see Jack and then head home and straight to bed. It did me some good as today I'm doing much better.

It did Jack good too, today he mover to The Floor!!! At 11:15 today Jack, his primary nurse,Mom and Dad packed up his belongings and moved about 150 feet to the other side of this floor. The step down nursery is a change of pace, but is a testiment to how far Jack has come and how close he is to being home.

Jack's new digs are nice (for a hospital). He has a private room and has a nurse that has about 4 other patients. So, that means there are long stretches of time where there is no one in the room with us. Today, for the first time since June 26th, the first time in Jack's life, Mom, Dad and son got to spend time ALONE together. It was marvelous.

Jack is doing good. His breathing is still a bit fast, but is better. The x-rays show the pneumo is pretty much gone. He is doing good on the food and his natural heartbeat is close to 117-120. That has put him getting a pacemaker back on the bubble; before they were going to put on in when the pace was in the 90's, but ever since Monday his pace has really picked up. If this keeps it up and his blood gases are good, there is a good chance he won't need a pacemaker.

Our tasks now are to continue to wein Jack from some of his drugs (he still has some DT's), reteach him to feed from a bottle (suck and swollow) and get his breathing down pat. All of this in the next 22 days (by Christmas!!).

We were told that the Vikings liked Jack so much that they are going to use his picture in an advertisement in the newspapers. We're not sure what that means yet, more to follow.

Coop is doing great. He has developed a funny habit though of waking up at 6 a.m., after Daddy leaves the house, and making alot of noise until Mommy picks him up and puts him in the bed with her. He then wiggels and skirms around until he is perpendicular to her and falls asleep. Then when he wants to wake up (and get Mom up to feed him) he starts to "cycle" (kick his legs) thereby hitting Mom in the legs and waking her up. Mom wakes up and looks over and Coop gives her his famous smile and poof, she's taken and Cooper gets anything he wants. Pretty smart for 5 months old?!

We took a big step today and now try to tie up some loose ends. The Floor means we'll be the primary caretakers and will have to have someone in his room 24/7. This will of course put more pressure on us, but it's a good warm up for having the twins together again. It's a fatigue we've been looking forward to for months now.

Thank you Lord for this opportunity.

TTFN

Tuesday, November 30, 2004 4:38 PM CST

44 Days Post Transplant

From Dad

Thata boy, my Jack showed the radiology staff today that he's a force to be dealt with. This morning while the techs were coming into Jack's room to take his daily chest x-ray Jack woke up, looked at the tech's and then stuck his tongue out at them. It was if to say, take that you big people.

Jack has been on a tear ever since and speaking of big people. Jack had visitors from the Minnesota Vikings again today. Cory Winthrope and Ryan Dixon paid a visit to Jack, sign a penant and took some pictures. They said that they use some of the pictures on tonight's broadcasts on KSTP, Channel 5.

Jack had his chest tube and pic line removed today. Also, he had one diretic and two antibiotics DC'd today. The chest tube is an experiment that we've been pushing for for some time now. We think that the tube is (1) providing an access port for air to come into his body through the hole in his chest, thereby a cause to his pneumothorax issues (2) is so thick that it hurts when he takes deep breathes, thereby causing him to take many, short and shallow breaths. This rapid breathing tires him out, burns his calories that should be going towards growth and rehabilitation and prevents us from working more on mouth feeding over the fear of aspiration. With the tube removed we are hoping that these issues will resolve themselves and the pneumo will not reappear. Time will tell.

Also, on the good news front, a member of the CV team came by and turned Jack's pacemaker off to see how'd he do. His heart was self pacing at 117 bpm. The pace maker was set at 124 bpm and they want him to have a heartbeat of 120 bpm. A week ago, unpaced, he was at 90 bpm. So maybe, maybe, maybe his heart is getting stronger and he won't need a pacemaker!

It's amazing how quickly things turn around with these kids. We continue to pray that Jack keeps this up and will be able to be transferred to the step-down and then home!

Cooper continues to excel in almost everything he does. He's a good kid and is growing so fast. We can't wait to get them together again.

Well, got to go. Keep praying for Jack, it helps. We need more days like today!!!

TTFN

Monday, November 29, 2004 8:48 PM CST

43 Days Post Transcript

From Dad

I got to see Jack this morning for just a brief time. I had to enter the room, put a mask on and just peeked at him...I was so afraid of infecting him with my cold but at the same time I couldn't not see him. He was twisting around and needed his diaper changed; after the nurse changed it he was wide awake. I peeked again and he smiled, smiled and smiled. It was the best I've ever seen him.

Unfortunately this mood didn't last the rest of the day. Apparently for Mommy he was agitated and probably having a little withdrawel and in pain from the chest tube. A subsequent x-ray showed the pneumothorax in his chest had grown slightly. This may have been the fact that they capped the tube off to see if he didn't need it, but apparently it still is draining air and this prevents it from growing.

He also had some work done with Speech Therapy (to help reteach him to suck/swollow) and they were unimpressed with his response...until Mommy got there. Mommy held Jack and worked with him and he was doing great. The result -- Speech Therapy is going to modify their time with Jack to when Mommy is there!

Coop is doing fine. He was upset last night and could not be left alone. We had to literally hold him all night long. I lasted to about 1:30 and then Mommy took over. As I was leaving for work Robin told me to lift him up and put him in the crib next to the bed. This lasted about 15 minutes...he just needed to feel the touch of his parents.

My cold kept me from seeing Jack this evening, but Robin kept me up to date on his progress. I was torn apart inside as at first she said Jack isn't having a good day, but then said "I'll call you back". Everything that has happened in the past instantly rushed back to me and I almost had to pull the car over on the way home. A few minutes later Robin called me and told me about Jack's restlessness and pneumo. By the time she left, Jack was doing better; so, so was I.

We're holding in there and try to keep our sanity with Jack's recovery. In the end, sometimes we think the doctors need to realize that Jack is a baby and quit judging him by other more strict standards. When Jack isn't drugged up and feel good, he is almostly exactly where Coop is developmentally. Jack's been stuck in the Hospital on a vent most of his life, he's getting stronger, but just needs time to fully recover developmentally and physically...Jack is a fighter and I'd like to see some adults go through what Jack has and be where he is now after 6 weeks of recovery.

TTFN

Sunday, November 28, 2004 7:57 PM CST

42 Days Post Transplant

From Dad

Jack continues to come along in his recovery. There has been little change from yesterday...a little more wein here and little less drug there. I unfortunately did not get a chance to see the little man today as I was sidelined with a cold. Grandma and Coop also seem to have the bug, so we're laying low and trying to rest today.

Of course the fear of RSV is constantly on our mind with our little premie Coop at home, so we are being more than cautious. Also, we can't be sick when Jack is ready to come home, they probably won't release him until our virus is over.

Yesterday while talking to Jack's primary nurse I asked for a print out of all the drugs he is currently taking. I got a page full. There are about 20 drugs he is currently taking, only one is a constant drip and the rest are either oral or periodic IV's. About half are for urine production (to help the kidneys) and antibiotics to fight the pneumonia. He'll probably come home on 10 or so of these, so as we get closer to discharge we'll have to go through drug administration training. Most of these drugs will be DC'd as time goes by. I was literally blown away by this figure, considering he has had so many discontinued since the surgery. I can only imagine how many he had 41 days ago. One final note here though, one of the stronger immunosuppresant steriods Jack is on, pretesone, went from 3X to 2X a day. They're cutting the dosage because it seems as if his body is accepting the heart!

Should go lay down now, hopefully I'll feel better tomorrow. This week I will attempt to draft a letter to the donor family.

TTFN

Saturday, November 27, 2004 3:29 PM CST

41 Days Post Transplant

From Dad

Today it's been 11 years of marriage today and the first anniversary with kids to take care. This is by far our best one yet!

Not alot new with Jack today, they are doing the on/off thing with the bumex again, hoping that his kidneys will kick in and be less chemically dependant. His respiratory issues are minor, but still there, and he is starting to become comfortable with the suck/ swollow thing again. All of these are issues we need to clear to get Jack to the Floor and eventually home!

Cooper is doing great, he's learning to keep his head steady now as he builds up his neck muscles. He prefers if you hold him so he's sitting upright, otherwise he might miss something. He is very fascinated, but perplexed, why Dad is putting up these big green trees in the house. I can only imagine what he'll think when we get the lights on.

Wow, Jack could be heading home soon!

Robin and I went out to lunch to celebrate our anniversary and couldn't stop talking about having both boys home. We're sure Coop will help his brother catch up on his development issues. I cannot wait to see both boys together again. I feel as if I got jipped when they were at Children's being co-bedded. I saw them before work and after, but either I didn't have much time before work or after work they were being held so much that I hardly ever got a chance to see them interact. I think I'm really looking forward to experiencing the "parents of twins" thing. For the past 118 days, here at the U, I've been more of a parent of a "cardiac kid" and another little one at home. Soon we can go back to living a simple, more private life, as the parents of twin boys.

I can't wait. God has answered our prayers and he continues to bless us. If anything this whole episode has taught us (so far at least...as this journey is not yet over and I don't know when it will be) is that the Lord is always there for you. All you really need to do is ask for something and He's there. Just like Jabez said, there is no greater joy for a parent than to give something to their children-- to fulfill their needs. I know as a parent I feel that way and I think in some sense that is the way God feels about us.

TTFN

Friday, November 26, 2004 2:42 PM CST

40 Days Post Transplant (5 Months Old Today!)

From Dad

Jack's doing pretty good today. We got a call about 10 a.m. and the "Fairview" name popped up on the number ID. "Oh, for the love of Mike, what the heck is this all about", was my first reaction. It was Jack's favorite Cardiologist just calling to talk about an Echo on Jack's heart earlier this morning. We didn't know he was getting one, but nevertheless we were happy as Jack continues to show a strong heart only getting stronger. She thinks that Jack's cardio system is doing good and has decided to go down on pretsone (sp?), one of the immunosuppresant steroids, to 2x a day from 3x. The other immunosuprresant level's, cyclosporene, have been steady and he'll probably stay at this level for some time. He'll be on one or both of these drugs, at vary levels, probably for the rest of his life. We are hoping and pushing to get rid of the pretsone because of some of the potential side effects.

So this was great news, his heart is settling into it's new home and getting stronger everyday. The final decision on the pacemaker hasn't been made, but it seems as if everyone is still leaning towards needing it - if anything just for those periods when Jack needs the extra output.

On the pulminary side of things, Jack still does have a pneumothorax on his right side albeit a small, static one. We just have to keep watching it and make sure that it doesn't grow any further. He is down to 1/4 litre of oxygen through the nasal cannula and his respiratory rate is getting better as well.

His digestive system seems to be working just fine, up to 24cc/hour through a tube directly into the intestines of 28 cal formula. He's still getting the low fat blend as a precaution to the nek and to heal his lymph system injury. Both of these issues appear to have been conqured.

His kidney's still require some chemical support to make urine, but that also is being weined. He has a constant drip of Bumex at 7mg/hr and receives an oral dose of something that I've forgotten the name of. Both of these have been held the same over the past few days, but now that his actual weight is the same as his "dry weight" of 4.5 kilos, they should start to back this off as well.

Finally, his pain killer drugs are all on the periodic side of things and they are being weined agressively. We think he'll be able to come home without requiring any drugs for this.

All in all, progress. We're down to 4 infusion pumps (one for bumex, one for food, one for a carrier and one for periodic drugs). 1 Chest tube. 2 Pacer Wires, 1 RA and 1 Pic line. We're getting there. The only system that hasn't been checked lately is his neurological one and that is doing fine...let me tell you....

Jack is looking around and focusing on things. He giggles when you make faces at him. He was mimiking my gestures last night. He cries at the appropriate times (and has a good one at that). He has the most infectious and expressive face many have ever seened. He has managed to use these expressions to make every female who comes into contact fall instantly in love with him. He's doing fine neurologically and I'm deeply proud of him because of it.

Coop is just a gem also. Yesterday while visiting his brother we put them face to face. They looked at each other for a while trying to figure it out who was who. Coop is also a lady killer though, he uses those mischevious blue eyes, gummy smile and high cheek bones to every advantage. His little expressions are just great. He is also really gaining control of his big mellon of a head lately. He wants to sit up and look around and hardly needs to be supported anymore. He's a great kid and so funny with everything he does.

As you can tell we love these guys. We have 29 days until Christmas and we're going to have both Corbo boys watching those tree lights this year!

TTFN

Thursday, November 25, 2004 8:04 PM CST

39 Days Post Transplant

From Dad

Happy Thanksgiving Jack and Cooper, your parents love you and thank the Lord for the opportunity to be your Mommy and Daddy.

Today we spent time with the boy's Godparents (and Cooper's future in-laws). We had a great time and even had a setting put aside for Jack, knowing that he'll be with us, at the table, next year. Of course though, he is always with us no matter where we are.

After dinner we took the whole family over to the U of M and are spending some time with Jack here. The boys stared at each other and, I think we got the timing right, we have a picture of both boys smiling at the same time. We'll try to get that posted soon.

Jack is doing pretty good. I'd say he's not as chipper as yesterday and his chest x-ray appears to have ever so slightly regressed, but he is still so much better than he was earlier this week. Jack's Cardiologist stopped by earlier today and we talked to her (she hasn't seen Jack is a couple of weeks) and she is of the opinion that Jack has two remaining issues to work through. First, his lungs are weak. This is expected after spending most of his life on the ventilator and should gain strength as time passes and he receives good nutrition. This of course is not a surprise to us after the past pneumothorax's and his fast respiratory rate. The second issue is Jack will probably need a pace maker. She thinks Jack's natural heart rate is okay for everyday use, but if he were to get sick he would not have any reserve to pull from. They can put a pace maker into him that will supply the needed inpulse only when he's needs that extra reserve. This is something he will probably grow out of a few years down the road. This also is something that we knew was possible and expected it.

These are all things that we can easily work through. Jack and Cooper are such gifts and today is the day to honor and be thankful for all gifts. We were blessed with the two boys, we were blessed that when Jack got sick we had the resources, staff and know-how to fix him up and we are blessed that we have two strong boys. We have learned so much since they joined us. If ever you needed confirmation that there is a Lord and that he is Good, we've received it these past 4-5 months.

Jack has a few more days in front of him before he can leave the hospital and begin his life at home. He'll always have a relationship with the hospital though, for his periodic tests and follow up visits and probably a few more "bumps" in the road. We'll be here with him every step of the way, only because there is nothing we'd rather be doing then helping our boys grow up and if this is part of it, then so be it.

Happy Thanksgiving, it was a special one for us. Thank you for your support and prayers.

TTFN

Wednesday, November 24, 2004 3:45 PM CST

38 Days Post Transplant

From Dad

Thanksgiving Eve and all is quiet in Jack's room. Jack has been doing fantastic today. His feedings were stopped this morning about 6 a.m. in anticipation of extibation. He had the breathing tube and vent removed at about 9 a.m. and has been doing great since. A subsequent x-ray has shown the pneumothorax to be almost completely gone. His respiratory rate has decreased to the 40 - 50/ minute and he is back on his feeding regime. Basically, we're where we were a week ago.

One of the Dr's just talked to us and it appears that if things stay the way they are, Jack should be able to move to "the Floor" this coming weekend or on Monday.

Cooper is doing good too and has officially become the family clown. He is so funny with his little mannerisms. It's just fun watching him.

We feel blessed and are so thankful for so many things on this day.

Mostly we thank God for Cooper and Jack and the opportunity to be their parents.

TTFN

Tuesday, November 23, 2004 7:12 AM CST

37 Days Post Transplant

From Dad

I'm going to post a little early today, since I probably won't have the energy later. (I posted yesterdays at 4:30 pm -- see the history.)

Jack had a tough night. He was in obvious respiratory distress when I got to the hospital yesterday afternoon. They were trying the air tent to remove the pneumothorax. At around 6 p.m. this was obviously not working as he was getting more labored in his breathing. The PICU Dr told us they were going to get a blood gas, an x-ray and also put him on the CPAP machine to see if that would help. At 10 p.m. Robin left, Jack was a little better off from a clinical breathing perspective, but his overall health was unknown. We knew that the next step was reintibation if he couldn't get his breathing under control. At 1 a.m. they performed another blood gas and x-ray. The tests showed the pneumothorax growing in size (up to about 40%, from 25%, coverage of his right lung) and his blood gas showed increased CO2 and he was turning more acidic. Something had to be done, he was heading for another crash.

There was a pediatric fellow covering the PICU and he called up the PICU attending and the CV Doc. They consulted with each other and called the transplant surgeon (who is on vacation in California right now) and decided that Jack needed to be reintibated immediately and another chest tube put in to relieve the pressure on his lungs. After answering my cross examination, I signed the 10th or 11th consent form since Jack has been to the U. I chuckled to myself while signing it...you want me to sign this to merely poke a whole in my boy's chest to let out some air? Heck, I signed the exact same form 36 days ago that allowed you to crack his chest and take his heart out. I obviously trust you.

Oh well, I guess the fear of lawsuits is always present.

The procedure went quick and easy, Jack is reintibated and has a new chest tube in. The tube immediately relieved the pressure on his right side and he has been stating 100% ever since on less oxygen. His blood gas immediately afterwards was perfect in all regards and he clinically appears great - his breathing is no longer labored. He is just resting now. The vent isn't doing alot for Jack, since immediately afterwards starting to breath over the vent.

Jack again showed his character. It reminded me of the first couple days after Jack was transferred to the U, he was in such obvious distress that it made me extraordinary anxious. Needless to say, I did alot of praying last night.

This episode was hard on Rob and I. I've been up close to 40 hours in a row now and can feel it. Robin went home to be with Cooper, who also was acting funny. It's uncanny and I've said it before, but twins can feel each other's moods. Coop was fussy and just not himself all last night, I think Robin got about 15 minutes more sleep than I did.

Through this latest episode though my reserves have been replenished. I don't know why, but I feel more energetic and think Jack does also. We're bringing that boy home for Christ's birthday; I'm determined!

TTFN

Monday, November 22, 2004 4:30 PM CST

36 Days Post Transplant (50% mark)

From Dad

Jack has seemed to take a slight step backwards over the past 24 hours. Late and throughout the night the nurses and Dr's were watching Jack's breathing become a little more labored and having decreased breath sounds on the right side. This is the side where his drainage tube is and his pneumothorax. They put the CPAP back on him during the night (had to stop the feeds during) and that seemed to help him, but again during the day he has not been breathing correctly, taking many shallow breaths. They have placed him in an oxygen tent of 100% oxygen, which is suppose to magically erase the pneumothorax. We'll see at 7 tonight if this was the magic bullet. If not, well, we'll just have to see what they cook up next to help Jack.


Also, taking Jack to the on/off schedule of the bumex seems to have been a little premature, as he has slowed his urine output. They had to put him back on a continious drip and will try to further wein him in few days from now.

Jack through this whole episode has been him usual self - calm and collected, full of smiles and sleeping alot. This is a double edged sword; one where we have a child who is so strong and good natured but two, he never complains until he's ready to crash. We'll probably never get any sleep when he finally comes home.

It's been a long day and Robin and I are needless to say exhausted again.

Cooper is doing fine. He's a happy baby who loves to take his morning nap in his swing, eat his bottles, smile and giggle, look all around at all the lights and just love you.

Big picture? We're closer to the end then the beginning, no doubt, and these problems with Jack's respiratory system are relatively minor compared to some of the things he's already battled through. We'll perserve and Jack will inspire us the whole way through.

TTFN

Sunday, November 21, 2004 12:18 AM CST

35 Days Post Transplant (5 Weeks)

Check Out some new pictures from yesterday.

From Dad

Tomorrow will be the half-way mark as far as how long we had to wait for Jack's new heart. They always told us that the recovery time is as long as the wait time. We are pretty sure Jack will beat that and be home before 72 days, but I guess it's a standard to go by.

Jack looks great today. His pneumothorax (air bubble in the chest) is reduce, but still there, so we're still waiting for that to disappear before the final chest tube is pulled. After discussions with CV surgery and the PICU staff yesterday, it appears Jack has a small hole in his left lung (pin sized). This is causing air to leak into the cavity between the lung and the rib cage. This should heal itself fairly quickly and the chest tube will drain the trapped air out. When this is under control, they'll pull the drainage tube. The tube is pretty big, it's about a half inch in diameter and snaked up under the rib cage up his chest cavity by the left lung. It's really not producing any drainage at all now, save for the trapped air. I'm sure once this is removed Jack will be able to breath more clearly and deeper, thus quickening his respiratory recovery and getting him home sooner. I can only imagine what it would feel like to have such a big hose stuck in my chest. I'm sure it would hurt with every breath.

As far as the rest of Jack's recovery, he is now on periodic (on/off) constant drips of bumex. This is his last constant drip and really once this is removed (he'll go to an oral dose of lasex on the Floor) they should be able to remove the last of the tubes and ports into his body.

He's been feeding at full throttle, and except for an occasional urp when he get oral medicines (e.g. magnesium) he is doing great.

Here's The Count:

4 Infusion Pumps (1 for periodic meds, 1 for CVP, 1 for Bumex, 1 Carrier)
1 Feeding Tube/Pump
1 Chest Tube
2 Pacer Wires
2 Port Penetrations (1 RA line into the heart and 1 pic line on the left arm)

He's getting there!

I've said it before and I'll say it again, God gave us two for a reason. Cooper is the funniest person I've ever met. He provides the relief and levity that we need. He is constantly smiling, except when wet or hungry, and loves to be held. I think the cutest thing is when he takes a bath. He absolutely loves it. We make it a big deal and when we place him in the water he looks up, eyes wide open, purses his lips and then starts to coo and smile when he's gotten use to the temperature. Mommy covers him up with wet towels to keep him from getting cool and then sprinkles water on it. Coop smiles, coos, kicks his legs sending water everywhere and is just so happy. He even likes it when Mommy scrubs his head with shampoo.

We're doing much better now. A little rest and down time has helped our disposition. We checked out the new Costco close to us last night and saw three sets of twins. We spent some time talking to the parents of one set who are only a few weeks younger than Jack and Cooper. At first we were a little sad that here we were, parents of twins, but we didn't have them with us. Then after some time and reflection we know we will soon. The positive knowledge that we'll have our twins together soon is just such a blessings from where we were 36 days ago. God has blessed us again.

TTFN

Saturday, November 20, 2004 1:21 PM CST

34 Days Post Transplant

From Dad

**New photos posted

Jack's looking better today. He is actually starting to gain a little weight and his legs and arms don't look like the twigs there were while they were drying him out. His breathing is a little more labored today though, it appears that he has developed another air bubble in his lung that isn't draining through the chest tube. This is putting pressure on his lungs and causing him to breath heavy and requiring a little more oxygen support through the nasal cannula. They are planning on performing a little procedure, later today, through the chest tube to see if it relieves the pressure.

Other than that, no real changes in his care. They have decreased his oral pain killer a little and gone further down on his one remaining constant drip, bumex. It looks like he's tolerating both. His kidneys are requiring less chemical help to pee so soon he could be off the bumex soon. I think then he could have the remaining pumps turned off and another penetration removed from his body.

We learned that the surgeon is on vacation until after Thanksgiving, so the pace maker surgery will not take place until after she gets back.

Cooper is doing great. Him, Mommy and Daddy slept real late today and all shared the same bed. The 2 foot, 13 pound little boy took up the lion's share of that King sized bed though -- go figure.

Robin and I are going to spend a little quality family time with Jack today. The unit that he is on is very quiet. They are sending half the nurses home at 3 today as there will only be 4 patients on the wing. Of course the rock of the wing, Jack, is still here though. However, the fact that the PICU is quiet is a good thing, it's hard to see sick babies.

A quiet weekend so far, hopefully this chest air bubble will take care of itself quickly and Jack can continue his march to recovery. He might even be off the PICU to "the floor" sometime this coming week.

TTFN

Friday, November 19, 2004 8:53 PM CST

33 Days Post Transplant

From Dad

First of all, congrats to Nicole on the birth of her daughter! I knew it was going to be a girl (probably the only thing I got right; I got all the other details mixed up when I told others at work - sorry!)

Second, Jack is doing pretty good again today. He has tolerated being off the nesiritide for more than a day so they were able to remove the jugular port. Here's the Count:

5 Infusion Pumps (Bumex, Carrier, Food, Periodic Meds, CVP Monitor)
1 Chest Tube
2 Pacer Wires

Two lines - one pic and one RA (through the chest into the heart)

Jack received a very special visitor today - his brother. Mommy and Grandma brought Coop into see Jack today, the first time the twins have been together since October 9th. Robin was telling me that they both just kind of stared at each other for a while, then quickly got preoccupied with looking at the mobile and soiling diapers. I bet they were thinking, "who is that strange handsome baby, he looks familiar, but I can't quite remember his name...as long as he doesn't take my time away from Mommy or Daddy I'll like him". Oh, Oh, we're in trouble... but I can hardly wait. I even got a chance to hold both boys at the same time!

It's possible Jack will get his chest tube out tomorrow! Jack's respiratory problems are quite deminished now. He still has some rather quick, shallow breaths that seem to prohibit him from fully re-developing his suck/swollow reflex, but I think removing the chest tube will help him out alot.

I personally am exhausted and plan on sleeping late tomorrow, at least as long as Coop will let me. I am hoping that this rest and a little decompression time will restore my patience and recharge the batteries. I'll need this for when Jack gets transfered to "the floor", which we think will happen late next week or the week after. At "the floor" we'll be responsible for more of Jack's care as he will not have 24 hr nursing. It's suppose to be like a half-way house, only immediately next door to the PICU if something arises.

I need the rest though, I'm starting to lose control of my behavior and have sometimes been rude to others because of it. I don't like it when I do that and it can't be good for the boys, so it's probably time to take a little time out, rest, watch a movie in the basement I worked so hard to finish last winter and then get ready to attack "the floor". It makes it easier to do this knowing Jack is strong and on the mend and he's being well taken care of. Robin has been keeping it together pretty good, even though she too is beyond exhausted. She just keeps digging deeper into her constitution and continues to go like the energizer bunny.

Thanks for being there.

TTFN

Thursday, November 18, 2004 7:55 PM CST

32 Days Post Transplant

From Dad

Today was probably Jack's best day in a looooong time. Mommy had a chance to hold Jack for several hours in a row after giving him a bath. He loved both. He has been placing his blood sat's in the 99-100% range off of only 1 litre and tolerating his feedings up to 20cc/hr. The daily x-ray showed status quo to slightly better on the "whiteness" of his chest. This was quite the accomplishment considering they DC'd his CPAP last night at 7:30 p.m. So in otherwords, it appears that his lungs have gotten better without the mechanical aid of the CPAP. His chest tube in outputing less than 5 cc since midnight, so this combined with full feedings (23cc/hr of 24 cal formula) by tomorrow should mean that the chest drainage tube comes out soon (e.g. tomorrow!).

The Nesiritide is off and out and if Jack can continue not needing it for another day or so, they'll no longer need the port in his jugular and that will be removed!

The only "not good" news today was the realization that Jack will probably need a pacemaker. They will wait a week or so for Jack to continue to recover and get stronger. Then they will perform the procedure which involves opening a hole in his chest (don't have to break the breast bone again, thank God!), put wires on the heart and then place the pacemaker under his skin on one side of his tummy. He'll have to be on the vent for this, but should be able to come off of it the same day of the procedure. This will probably add about a week of recovery time in the PICU after the procedure.

We were hoping this would not be necessary of course, and it's still not a done deal, but it's looking more likely. The chances are Jack will eventually outgrow this sometime as he grows up and may be able to have it removed. That of course is something that remains to be known. With a pacemaker they recommend that Jack not engage in contact sports -- so maybe that inside linebacker position for Notre Dame will have to be a wily shortstop for a MLB team instead.

We may not resolved this issue until Jack is a teenager.
Of course, just saying that Jack will have an issue as a teenager is a blessing from God compared to where we were just 5 - 6 weeks ago.

Mommy had a "come to Jesus" talk with some of the Dr's today and said that her baby is spending his first Christmas at home with his brother. That is our goal and I would not want to be the person that gets in front of Robin and her baby during such a Holy season.

Cooper is doing fine, being a great little boy and really looking forward to seeing his brother again. This evening I had an event with my colleages from work, so I didn't get a change to see Jack until later and then only for a short visit. I have to tell you just looking into his eyes, seeing him look around and watch every little movement from his favorite mobile and seeing him cry when he had gas was the best thing in the world. I drove home the happiest I've been in a long, long time because it finally seems as if it's real.

God has always been with us, I know, I've felt His presence from the very beginning, but today was the first time I could see his grace physically manifested.

TTFN

Wednesday, November 17, 2004 4:18 PM CST

31 Days Post Transplant (One Month)

From Dad

A month ago, wow, seems like at least two years. A month ago we were watching Jack in quite the battle as he started his long climb down that mountain we talked to him about. We were first introduced to the idea of "bumps in the road" and the fact that his recovery was probably not going to be totally smooth.

We felt so blessed that day, we were getting our child back and God had heard all of our prayers. That simple belief and feeling is still engrained in every fiber of our soul. However, in the last 31 days we have also been tested like we have never before -- in almost all possible ways; physically, emotionally and spiritually. The strain of those 31 days has compounded exponentially, not in a linear fashion, and we have grown increasingly fatigued. We have tried to not let this affect Jack in any manner, but I'm not so sure other people around us haven't escaped some of our wrath. Jack though has grown increasingly stronger over this past month and has blown through many of those "bumps".

Jack is on the mend, there is no doubt about it. We believe he is past the half way mark to coming home, but even if he isn't, it's just a matter of a little extra time here and there. God has indeed blessed us many times through this; mostly He has given Jack another chance at life and I think Jack knows this and will use that chance to accomplish wonderful things.

Since yesterday Jack has had his Nesiritide cut in half with the possibility of D/C'ing it later tonight. The only other continuous drip is his Bumex (diuretic), which they have started to wean down to an oral type of dose to be given a few times a day. This will probably be one of the drugs he comes home on.

The Count:

7 Infusion Pumps (One for his Food, One for the CVP, Two Continuous Drips, One Fluid Carrier and Two "stand-by's" to deliver periodic medicines into Jack)
1 Chest Tube
2 Pacer Wires

Jack's daily x-ray showed a little more "white" on his lungs today. The Dr's think this is not from the pneumonia, which seems to be under control, but not yet conquered, but some of the air sacks in his lungs aren't being fully opened when he breathes. In other words, he isn't taking deep enough breaths to fully utilize his lungs.

One of the theories is that the chest tube is stopping him from breathing fully, as the tube probably provides enough pain to prevent him from fully expanding and contracting his lungs. They have told us they won't remove the chest tube before he produces less than 25 cc drainage and is on full feeds. One way of helping his lungs out is to put him back on the CPAP at night. But to do this, he can't be fed into the belly (has to be directly into the intestines) because of the fear he'll aspirate and it won't be noticed because of the mask over his mouth. And if he can't be fed he can't get the tube removed and won't develop enough strength to finally breath strongly on his own. Okay, that took a whole paragraph, and as you can see he's stuck in a catch-22 situation. We don't know what the solution is yet, but we want him to be fed and think his chest tube is dry enough, let's remove it. We have to keep Jack getting fed, he loves his food and only gets stronger with it. Also, get that damn tube out of him, he'll feel better then.

This is a problem we'll eventually work through, but it again shows the frustrating situations you can be in during the recovery phase.

Coop's doing fine. I was a little worried last night as every time I picked him up he cried. When Mommy picked him up he smiled and giggled. Well, we think it had to do more with gas and Coop being constipated. After a fussy fit that lasted almost two hours, Robin had the bright idea of heating a rice sock and putting it on Coop's tummy. She did that and literally about 10 seconds later Coop was fast asleep in my arms. He awoke this morning in a good mood.

That's about it from here now. One day closer.

TTFN

p.s. Check out some of the pictures Robin posted yesterday.
p.s.s. Mommy AND Daddy got a chance to hold Jack yesterday!

Tuesday, November 16, 2004 4:05 PM CST

30 Days Post Transplant

**New pictures posted

From Dad

Sorry I missed yesterday's post; traffic and errands kept me away from Jack for my evening visit and consequently the computer. Also, in the evening Coop was having a bit of a tantrum which ate up my time. In a way though, it was nice to have the confidence and luxury that I felt I didn't have to be by Jack's bedside and to battle the everyday issues that face parents with a fussy baby.

Anyway, Jack continues to improve. Over the past two days he has been taken off the milrinone and fentanyl, both have consequently allowed one carrier solution and one penetration to be removed. In addition to that, Jack's respiratory issues have improved to a point that he no longer needs the CPAP and is only on 1.25/litres of oxygen through the nasal canula. The result in the Count:

7 Infusion Pumps
1 Chest Drain
2 Pacer Wires

with only the pic line in his left arm, the jugular central line in the neck and another line to continuously monitor his blood pressure left as penetrations. He also has a feeding tube down his nose into his tummy.

Jack's pneumonia has improved also. He seems to have developed another air pocket in his chest, not sure what that is from, but it'll drain along with the fluid in his chest through the chest tube. This has been reduced to a trickle and the surgeon has told us that as soon as it's less than 25cc/day and he's on full feeds, it'll be coming out. Jack has averaged in the 20's per day for the past week and is now on a little more than 1/2 feeds (14cc/hour, so if he keeps this up by the end of the week it's possible the chest tube will be out.

Jack has been seeing the PT/OT people as well as speech therapy. The PT/OT people are working on stretching his limbs and strengthening his muscles. The speech people are helping him develop the suck and feed impulse again.

We are hopeful that by Thanksgiving (or by our Anniversary) Jack will have graduated from the PICU to the step down unit located on another part of this floor. At the Children's floor, Jack will no longer have a one to one nurse--he will be by himself in the room, except for Mommy, Daddy, and Grandma taking shifts to watch over him. A sure sign of Jack's progress is the fact that he is no longer the first patient the Dr's and Residents talk about during morning rounds-- he's the last! This must mean they see him in less of a need for their critical cares. (In the past Jack was the first and they spent up to an hour discussing his specific case alone! It was like a conference of white lab coats outside of his door.)

Cooper has made progress also. Today he saw the Physical Therapist for the second time to address his torticollis. He has less developed muscles on the left side of his neck and consequently he isn't comfortable moving that way and his head has started to be mishaped in the back. In one week's time, largely through the efforts of his Mommy and Grandma, Coop has done daily exercises to strengthen his neck muscles. He has made marked progress and you can already tell in his improved range of motion and the shape of his head is getting back to the perfect shape it was at birth.

Our babies are starting to act like babies. They are still 25 miles apart and we are still living a strange, stressful existence, but things appear headed in a positive direction. Robin and I debate, on a daily basis, when we think Jack will be home and our family will finally be whole again. All I can say at this point is the consensus is it'll be sometime in December. Hopefully early in the month.

We continue to pray every day for improved health in Jack and continued strength in Cooper. We are sure these prayers are heard as loud as the prayers at the beginning of this journey. I want to thank all of you again for the help you have given our family during this time. I also want to ask you to continue to pray for Jack, that he continues his march towards recovery and that in the long term he does not have serious rejection issues and that he is able to enjoy the perfectly normal life we all expect him to be able to.

TTFN.

Sunday, November 14, 2004 11:51 AM CST

28 Days Post Transplant

From Dad

I'm just sitting here with Jack this Sunday and it's kind of nice.

Jack has been very stable all night and morning long. His respiratory issues are improving. It looks like the pneumonia is being controlled, but not yet eliminated. Jack has been off the CPAP for 4 hour stretches and they are now doing a 4 on/ 2 off during the day and will keep the CPAP on all night long. Finally, his x-ray is showing some inprovement as well. All in all, we're moving in the right direction and he is slowly moving off the diagnosis of pulminary distress.

Jack's other systems have also remained stable and strong, he's just proved to us over and over that you have to go very slow with him. So, we will.

With that the Nisiritide may be coming off today, which is for his heart as well as providing some renal support. The Fetaynol, the pain killing narcotic, is on the verge of being shut off and they'll probably reduce it to little more than a squirt today with hopes of going off of it completely Monday or Tuesday. With these two gone we can eliminate some of the carrying fluids, some pumps and a penetration of two.

Slow, but sure, we can live with it.

Seeing Jack this morning sleeping peacefully, not in pulminary distress and without the CPAP on was absolutely great. He is still somewhat drugged up when he opens his eyes, but you can actually get close to him and kiss him and whisper Jesus Loves You in his ears. Maybe I'll even get to hold him before Thanksgiving! (Robin will probably before me, since it takes about 20 minutes to move him from the bed to her arms, we are very reluctant to do it but also know it helps in his recovery.)

Coop is doing fine and went out to dinner with us last night. He has developed the curious behavior of wanting to sit with the big people at the table. We had him in his car seat but as soon as he got done checking out all the lights in the restaurant he starting to fuss and wanted to get up. I picked him up and put him on my knee and scooted close to the table. It was funny seeing this little head at the table on my knee just looking around, but he thought it was the best thing in the world. Although it is hard to balance him on your knee and hold him with one arm and try to eat your meal with the other.

It looks like we'll end the weekend a little better than we started it. Keep praying.

TTFN

Saturday, November 13, 2004 5:35 PM CST

27 Days Post Transplant

From Dad

I'm not sure where to start today. Jack started out the day looking as if he may be sliding backwards a little bit, with possible reintibation right around the corner. After spening a little time with him and letting him just rest in a very quiet atmosphere, and after a long talk with the Dr, in which Jack must have overheard, he seems to have turned a corner. He's probably cleared of being reintibated and is now working 4 hours on/off the CPAP. He may be on it all night long just to let him sleep and gain some strength.

Because of his "in-between" respiratory status they have made little changes to his drug drips. They actually added milronone back to his regiment, not exactly sure why and it looks as if he'll be off of it again soon, so who really knows. They have cut his narcotic down in half again and he seems to be tolerating it fine. It's possible that this could be gone by tomorrow and that would be fabulous, as it would allow the nurses to consolidate some of the drug lines into fewer ports and thus decrease the number of penetrations into his body.

Jack's pneumonia is still there and he's being treated for it. Not much change along this front except for the respiratory issues mentioned above.

The Count:

11 Infusion Pumps (we lost one from yesterday, don't ask me how or why??)
1 Ventilator for the CPAP (1/2 time)
2 Pace Wires
1 CHest Tube

Notice -- no Foley!!!

Cooper's doing good and actually got to witness Mommy and Grandma get shots today (flu) instead of him getting it (I got one also, but at a different time). I think he was secretly saying "see!!!, how do you like it??"

We're on the edge still, but as I'm typing this I hear Jack crying. I'm about 40 feet from his bed. He has a set of lungs on him and it's music to our ears to hear this. We have never heard Jack scream until now -- in his whole life because of that damn tube and his sedation, and before that he lived in a plastic box for a while in the NICU.

Anyway, time to finally be a parent and comfort my son, so I got to go.

TTFN

Friday, November 12, 2004 4:01 PM CST

26 Days Post Transplant

From Dad

Okay, a little sleep and four hours with Cooper on my chest has calmed me down somewhat. I'm no longer a menance walking the streets alone, but rather a tired man with lower back pain and at least twice as much gray hair as I did in June.

Jack is doing fine, his x-ray shows improvement on his battle with this infection. He is resting and his breathing doesn't appear to be as labored. His gases have been great so far today, with the exception of the most recent showing his hemoglobin being low. So, he's scheduled to get his tenth blood transfusion any minute now. Again, these are primarily the result of the fact they draw so much blood from him everyday for labs that his body can't make it up fast enough. This is especially true when you're not getting fed-- which should resume again sometime tomorrow.

Jack has made other progress as well. His milrinone has been turned off, so he is no longer on any constant drip "pressers" for his heart. He does take some oral medications a couple times a day, but his heart has seem to really picked up the slack in the past week or so... probably not 100% yet, but more likely than not in the ball park that would enable us to take him home. The issue of him needing a pace maker is still up in the air, but I think the odds are he will not need one with a few more weeks under our belt here.

They have also cut back the Fetenyol, which is the painkiller narcotic he's been hooked on, and supplementing it with an oral pain killer (forgot the name). This is helping with his DT's and he appears stronger and in not as much distress.

The hope is that this weekend we'll see dramatic reductions is the amount of pumps and penetrations into Jack. The amount of constant drips that he's on is very much reduced and there's little reason to keep all of these lines into him, because each is another port for infection.

Jack has actually gained some "good" weight; not sure how much, but he looks like it and they are less concerned now with "drying" him out.

The Count:

12 Infustion Pumps
1 Ventilator (for the CPAP)
1 Chest Tube
1 Foley
2 Pacer Wires

Cooper is doing great and was the exact tonic Robin and I needed last night. He'll probably never understand the comfort and source of strength he's been for us. His part in this journey is silent and in the background, but absolutely indespensible. He has provided the strength, character and comic relief necessary for us to continue.

We continue to pray that God shows us the way. We enter into another weekend with our family spread out, but at the same time closer together.

Thanks for being there.

TTFN

Thursday, November 11, 2004 4:15 PM CST

25 Days Post Transplant

From Dad

Jack has a pneumonia. It seems to be the same strain that he had previously (about three months ago). They're treating it with antibiotics and he's still on the CPAP to give him a little help breathing. He's not as labored at his breathing as he was yesterday, but he still uses his stomach muscles a little in the effort. The good news though is that he continues, and did all last night, to post great blood gas results. He's been agitated on and off all day long also.

Apparently Jack had an Echo yesterday, but the Dr's neglected to tell us about. We found out the results today and his heart is doing well. The Dr's think that he's pretty dried out and will start to take some of the drugs to help him urinate out. Also, he's almost completely weined from the narcotic pain killer, so that should be disappearing soon.

The Count:

12 Infustion Pumps (somehow we gained one from yesterday?)
1 CPAP Ventilator
1 Chest Tube
1 Foley Cath
2 Pacer Wires

This may seem like a weird fascination to be keeping track of all these pieces of equipment, but the truth is that every one of them is an impediment to us getting physically closer to Jack. And honestly, it's starting to make us mad and wear on our patience. We feel Jack needs our touch as well.

Along with this theme is the fact that we're just get tired of being here. We're tired of Hospitals and all the crap that comes with it -- period. They say that God only gives you what you can handle, well we are at that limit. I'm almost to the point of wanting to hurt someone.

I guess that's enough whining, please forgive me. Overall Jack is coming along and that is great. God has given him and us another chance and we're just biting at the chomp to seize that opportuinty. The opportunity to finally be a family of four alone in our house.

Thanks for listening to me vent.

TTFN

Wednesday, November 10, 2004 4:44 PM CST

24 Days Post Transplant

From Dad

It looks as if Jack has developed some type of infection in his left lung. Of course we don't know for sure yet and can't tell what type of infection, but it appears to make him work at breathing a little harder. The Dr's noticed that his daily x-ray looked a little "wetter" than previously, so they did a brochiscopy (sp?). This is where they snake a scope up the nose and down his nasal passage into the lungs to take a look around. They weren't sure what they'd find and were hoping it wasn't something serious.

Jack, of course, weathered the procedure like a trooper, and the Dr's found that his vocal cords and throat were undamaged (pretty good for being intibated for over 4 months). His right lung was fine and his left lung has a compressed area to it as well as some bloody discharge that they sucked out. The discharge is an indication of some type of infection. The compressed area could be from a number of things, including the infection. Both of these factors are contributing to his labored breathing.

All in all it's another one of those "bumps" in the road. There doesn't appear to be any long term issues, but rather a short term incident that will have to be monitored and treated more closely. The Intensivist told us that it's quite possible that this infection will get worse before better, so there is a chance Jack will have to be reintibated. They'll try various techniques to avoid this, but it is a possibility. If he is, they'll treat and fix the infection and extibate and start over.

This whole event, of course, is not what Robin and I wanted to hear, but then again it appears to be a minor and not wholly unexpected event. Also, honestly, I am beginning to get numb to some of these bumps. I think my capacity to comprehend and cope is taxed to the max. The thing that keeps me digging deeper into my reserve gestault is just seeing Jack do it. I know he feeds off of my emotions, so I need to be strong for him.

Anyway, another bump in the road but we're still moving ahead. Jack had his Dopamine removed today and they are working on a narcotic plan to more effectively wean him off of the pain killers.

The Count:

11 Infusion Pumps (- one drug, but they kept the pump for other periodic meds)
1 Chest Tube
1 Foley
2 Pacer Wires

Cooper is doing well. He decided to get up at 2 a.m. last night and go on a binge. He devoured two bottles of formula and one of water. True to form, after he was done he burped and had a historic BM afterwards. He then smiled. I have to laugh and share this, because this kid is the funniest little boy I've ever seen. You can tell what his personality is going to be like already...he knows what he likes and he knows when he wants it. If you don't get with the program he'll let you know, but if you're on top of things, he's full of laughs and giggles. I wonder who he gets these things from?

Got to go

TTFN

Tuesday, November 9, 2004 4:09 PM CST

23 Days Post Transplant

**NOTE: New pictures posted


From Dad

Jack continues on the path to recovery. He has spent more than 24 hours off the vent and seems to be doing fine. He has "surprised" some of his Dr's, and all Robin and I can say is we're not surprised at our Jack and his strength. They tell us that the first 72 hours off the vent, after this long being on it, are the real test. Other babies who have been on the vent this long sometimes poop out after a while, they just don't have the lung muscle strength to keep breathing on their own. Jack is doing just fine and his blood work is very good. He does seem a bit labored at taking breaths, using more of his abdominal muscles than usual, but I think that has more to do with him being a little unsure of what is going on.

I guess that's the hardest thing about seeing Jack right now. I don't know if its the anxiety of finally seeing him do stuff on his own, the apparent hint of fright on Jack's face or the shear weariness we feel from all this time all mixed in with the excitement of finally seeing an end to this sojourn; but, whatever it is it's weighing heavy on us. I don't know what to feel. I feel it's time to start getting back to normal, but am too afraid of making too many plans or getting too involved. I also see the look on Jack's face and again am left with the sense of frustration because there is little I can do to help him right now. That in itself is probably the hardest thing for a man -- not just jumping in and fixing it and it's driving me crazy!

The nurses tell us that Jack is just getting use to (1) breathing totally on his own again, (2) the freedom of motion he now has not being physically connected to a tube, (3) the fact that he sometimes makes a noise now when he cries and (4) he's still being weaned from the narcotics. All of this are probably and justifiably making Jack just a little nervous. I'm sure they're right and I'm sure that with a couple more days Jack will be fine and will be back to watching Oprah and laughing and smiling in his Mother's lap again.

Speaking of which, Robin finally got a chance to hold her baby again today. It's been since before the transplant and both of them were just itching to get close to each other. Robin said that Jack's anxiety quickly disappeared as he was held next to his Mother's heart and he quickly fell peacefully asleep. In my mind's eye, that's the way it should be.

The Count:

11 Infusion Pumps
1 Chest Tube
1 Foley Cath

1 less pump from yesterday -- more progress.

Coop is doing fine and looking forward to seeing his brother again.

A day closer.

TTFN

Monday, November 8, 2004 3:25 PM CST

22 Days Post Transplant

From Dad

It's gone!

That damn tube is gone and we can actually see Jack's face again...and it looks good!

Jack had his breathing tube removed about noon today without incident. Since then he has been in an air tent supplying oxygen rich air. The Dr's were very happy with his progress and neither one of his vocal cords seem to have suffered any damage or paralysis after more than four months with it in. He seems a little sore down there and is starting to get use to making noise again. When he cries, ever now and then he emits an "aaoohhww" type sound. He's a little unsure of what is happening, but is quickly getting use to a more normal style of breathing.

The count:

12 infusion pumps
0 ventilators!


I asked the RT's to keep the tube and recently one came up to me asking me what I'm going to do with it. Apparently no one has ever asked for it before. Quite simply, I'm going to have a ritual burning of it just to cleanse my soul, knowing that now I can be closer to my little son's face.

Robin took a few pictures, so we'll get those posted sometime soon. He looks pretty good and you can definitely tell he's a twin.

Cooper got his RSV shot today and got through it like a trooper. He's doing fine and actually slept about 5 straight hours last night. The only unfortunate thing is that he started counting those five hours about 2 a.m. (too bad for Daddy that is, who has to get up early).

Robin and I are thrilled. This is a hugh, concrete step towards Jack's recovery. He is starting to look more like a little baby and less like a patient. We have prayed for a day like this for a long, long time and perservied through many ups, downs, trial and tribulations. We entered this thing as new parents and are almost ready to exit it as a family. We know there is still a couple of miles to walk on this road and there could be a few more "bumps", but I think we're almost back to a position of strength again. We thank the Lord every day and promise to live every day in the full glory that He has given us --Jack specifically. We pray the prayer of Jabez everyday and know that He has enlarged our territory now, and we're ready for it!

Wow, what a day. A few more milestones like this and we'll have him home.

TTFN

Sunday, November 7, 2004 7:33 PM CST

21 Days Post Transplant (Three Weeks!)

From Dad

This time three weeks ago the Dr's came out and told us that Jack's native heart was out, he was on by-pass and they were just starting to sew the new heart in.

Today Jack is sleeping fine, his weight is almost back to normal and he is less than 24 hours away from getting that damn tube out of his mouth. They are going to try it tomorrow, probably sometime around noon! I asked the Dr's to keep the tube so I can bring it home and have a ritual burning.

Robin and I are so excited. Jack has made so much progress this week. He has come down steadily on the vent and kept his blood gas work rock solid the whole time. What a dude! We are excited just to see his whole face again and not be obscured by that tape or anything. I can't wait. I'm sure Jack will be able to handle it just fine.

As for the rest of the drugs? Jack is making steady progress and I think as soon as they are satisfied with his weight and he is able to be off the vent, then the other drug drips will start to drop off quickly. The pump count is still at 12 though and one chest tube.

He is up on his feeding also, on that new low-fat formula, and seems to be tolerating it fine now. He had a little adjustments to go through and it was causing him some major gas problems. However, he has seem to work it out and is at least getting fed now.

Cooper is doing fine, seems to be a little fussy today, not sure why but I guess babes will be babes.

That's about it. These posts are getting shorter and just filled with positive moves. I love writing this. Robin and I are so, so excited and thankful. We even talked last night about what it would be like to have both boys in our bedroom at night. I'm not sure where we'll put them both? What a wonderful problem to have. God has blessed us, we know.

TTFN

Saturday, November 6, 2004 6:21 PM CST

20 Days Post Transplant

From Dad

If it wasn't for the fact that he has to go through this in order to come home, my heart would be breaking right now. Jack is having a hard time coming off some of his narcotics. He is very agitated and mad and cries. I think the narcotics are only part of this, in fact Jack is starting to feel better and realize that all these tubes and lines into his body hurt. He's saying get this stuff out of me and let me be a baby.

With that said though, Jack is really doing great. They have gone down on the vent to a point where in reality Jack is doing all the work himself. If he continues this they'll remove the vent tube Monday!!!

He is starting to get some trophic feedings as well to get the gut moving. They removed one of the chest tubes this morning and the other one has really tappered off, which means it'll probably be removed soon also.

All in all another day pointed in a positive direction.

Cooper watched Dad mow the lawn and then put up Christmas lights today. I think Minnesota is the only place where you can mow the lawn one day and then snow shovel the next, as today was in the 60's and the next couple of days will be getting cooler with snow expected sometime early next week.

Cooper's doing better now from his immunizations as well. Unfortunately he has to go in Monday for his RSV shot though.

Another day closer to getting Jack home. Robin and I aren't quite there, but we're almost ready to start thinking about something besides one day at a time. God willing we'll be able to soon.

TTFN

Friday, November 5, 2004 4:34 PM CST

19 Days Post Transplant

From Dad

Jack continues his steady, slow progress towards getting that damn tube out of his mouth. He is doing longer pressure trials and has had no problems. We're still thinking the big event will occur sometime early next week. It will be such a glorious moment to finally see our boy's full face and hopefully see him smile again, without having to look through the tape.

The Dr's decided that Jack really isn't a 4 kilo baby when completely dried out - dah. He's a 4.2 kilo baby. He topped the scales this morning at 4.4 kilo's so he's getting pretty darn close to being dried out. This will help not only his pulminary function, but should also help in the healing of his lymph ducts. This is all great and the tangible proof of his improvements will be the removal of the chest drainage tubes and several of the med pumps delivering drugs into his body (e.g. he won't need that many diuretics then). Immediately after the transplant he had 16 infusion pumps and 2 respirators (the ordinary one and the nitric oxcide one connected to it). Currently he has 1 respirator and 12 pumps, so we're getting there.

Jack is still having a little of the DT's as he withdrawls from his pain killers. Also, he got his RSV shot today, so right now he is a little out of it.

Cooper is doing better as well, he had a mild fever for the past 36 hours from his immunizations. It was so incredible last night though; he wasn't feeling the best, you could tell, so Mommy decided to give him a bath. I got the bath ready and undressed Cooper (he likes his natural state) and Mommy placed him in the bath. His eyes opened wide and he turned and looked right at Mommy and gave her the biggest smile I've ever seen. It was as if he was saying, "oh thank you Mommy, this feels so good on my poor legs where I got the shots, I love you so much!" Cooper kept those smiles up for about 10 minutes, then the water started to get cold and he wanted out.

That's about it from here. I'm looking forward to a nice quiet night and weekend (weekend's always scare me now since that's when all the big dramatic events seem to occur.)

TTFN

Thursday, November 4, 2004 4:38 PM CST

18 Days Post Transplant

From Dad

Jack continues to progress. He is down on the lowest setting on his vent and has been doing "pressure trials" all day long now. He started at half-hour intervals and did so good, they pushed his to one hour trials. He passed everything just fine and hopefully will gradually build up his lung muscles enough to come off the vent totally by this weekend or early next week.

He is completely off the Epi and is down to the lowest dosages on his other "pressers". He is still up a little from his "dry" weight of 4 kilos, however, I think some of that weight may be actual growth. They haven't cut much further on the diuretics though, still trying to push the fluid out of his body. His "Foley" cath is still in, but I think he's strong enough now to know that this sucks, and wants it removed. His chest tubes are still in, but drainage is trailing off and hopefully he'll be able to get these removed soon as well (and hopefully his lymph system will have been repaired).

As we've stated before, Jack is somewhat of a junkie. He is addicted to the Fentynol, a pain killer. He's been on it since he got to this Hospital 95 days ago. They have gradually cut back on the dosage and today went from 1.5 to 1.25 ml/hour, which isn't as big of a drop as previous ones, but still seems to be causing Jack some discomfort. He is agitated and displays some symptoms of the DT's. In a way however, seeing him mad, kicking his booties off and being an infant is comforting to us.

Cooper is doing okay today; all last night he had a mild, mild temperature due to his immunizations, so he had to sleep with Mom and Dad during the night. I think this helped him as today he was smiles again. He's looking forward to seeing his brother, as are we to see them together. Cooper hasn't seen Jack since a week before the transplant, so it's been a while now and I bet they really miss each other.

Well, we're one day closer to getting Jack home.

TTFN

Wednesday, November 3, 2004 4:38 PM CST

17 Days Post Transplant

From Dad

Jack is having another great day. After the "no-rejection" news yesterday the Dr's have been given a green light from the Cardiologist to start to wein Jack from the ventilator. So far today he has been completely weined from the Nitric Oxcide and has gone down considerably on the vent. It's possible that he could have that damn tube removed by the weekend at this rate!

In addition, they have made small changes on some of his drugs. They want to go slow with Jack after his little episode 9 days ago, but that's okay with me. They still need to give him some help expelling the extra water weight in his body, but that too is starting to come around.

Jack was in a great mood today when he saw his Mommy. He smiled and was awake for her for over two hours in a row. What a guy, you can tell he's starting to feel better.

Cooper is doing fine. He had a trip to the pediatrician this morning where he weighted in close to 13 pounds. He has broken through the premie and is on the regular full-termer charts now and quickly closing the gap. The pediatrician thinks he's doing great. Unfortunately, Cooper had to get his second series of immunizations this morning. You can tell who his brother is though, he cried when the needle went in and with the help of some food, just a few minutes later was flashing his gummy smile to his Mother.

It has been a good day today.

TTFN

Tuesday, November 2, 2004 4:06 PM CST

16 Days Post Transplant

From Dad

We Won! We Won!

Regardless of the outcome of today's election, my candidate has already won!

Jack's biopsy results came back this afternoon- NO SIGNS OF REJECTION!!!

They are cutting back on one of the steroids already!

Jack's still has a ways to go; he still has significant amounts of fluid in his body that need to be removed and has to repair his lymph problems...also, my little boy is somewhat of a junkie in trying to withdraw from some of the narcotics, but all in all, he is getting better!!!

We also almost dare to start dreaming of something beyond the immediate. I don't think we'll ever be comfortable completely doing that, but it seems like it's possible to start to think that way now.

We have a couple of weeks ahead of us before we can even get out of the ICU, and then a week or so in a step-down type of unit, and every one of those days will be another challenge for Jack, with potential problems, but in the large picture we are progressing! He'll have more rejection check's over time, but at least we're starting off at a good spot.

Praise the Lord!

TTFN

Monday, November 1, 2004 2:58 PM CST

15 Days Post Transplant

From Dad

Cooper got to fall asleep on Daddy's chest last night and then sleep between Mommy and Daddy. I know this is something we need to not do, but it's so damn hard not to now a days. Coop just loves it and honestly, it's therapy for me to have that 12 pound bumble bee on my chest.

Jack had his first biopsy today. We thought they were going to go through the groin and snake the cath up to his heart that way. Instead they decided to go through the jugular in the neck. We waited outside and after about an hour the Cardiologist came out with a little plastic cup filled with sterile water and a few chunks of my son's new heart in it. They'll run tests on it to see if there are any signs of rejection. Hopefully we'll know yet today, but we were told not to be surprised if we don't have results until tomorrow. If there are signs of rejection, they'll dial up the immunosuppresants to combat it. The Cardiologist said that she expects, but is by no means would not be surprised otherwise, to see little to no signs of rejection. Babies usually have a good response to transplanted organs because they have a very limited immune system.

Other than that Jack is doing well. They purposely did not change anything on his drug drips or vent settings until after the biopsy. Starting tomorrow they'll probably start to go down on the vent with hopes of extibation sometime this weekend or early next week.

We also found out preliminary pathology reports on Jack's native heart. Nothing earth shattering, but we're still sorting through our emotions on it, so I'll keep that subject open until a later date.

I returned to work today...what a relief. It was wonderful to see folks and humbling to receive their support for Jack and his recovery. It was great to get back into the swing of things and actually dare to dream of something more than a few hours from now.

That's about it, we'll have news on the biopsy NLT tomorrow and that, I guess, is probably the biggest test Jack has had so far.

TTFN

Sunday, October 31, 2004 7:57 PM CST

14 Days Post Transplant

From Dad

We found a mysterious big bug in our house today. At first we weren’t sure what it was... It kinda smelled (dirty diaper) but had a huge, cute smile. Robin was a little worried because she can’t stand to have bugs in her house. After a little research the bug turned out to be a 12 pound bumble-bee named Cooper. He wasn’t the kind of bumble-bee that stings you and he is the only bumble-bee that I know that can’t fly—-probably because he has such fat cheeks and thighs. This bumble-bee liked to answer the door to trick-or-treaters with his Daddy and can’t wait until next year to go out with his brother Jack and collect all kinds of candy. (Stay tuned for pictures in the next few days.)

Mommy and Daddy are actually at home tonight trying to rest a little. This is the first time we’ve been home together since the transplant. We’re trying to get some much needed rest so we are strong for the rest of Jack’s recovery. It was nice to return to something approaching “normal”, especially to see our neighbors out in the street with their kids during this holiday. Next year we’ll have to do the rounds with our little munchkins.

We have a costume for Jack, but he wasn’t quite ready to wear it. I think we’ll end up having a little Halloween celebration at our house sometime in November or December. We’ll have a 14 pound bumble-bee by then and probably a 10-11 pound pumpkin.

Jack’s road to recovery is going pretty good. We were warned that the recovery time post-transplant would be as long as the wait time pre-transplant —basically the longer a child is in an ICU the more risk of complications arise. What they didn’t tell us is that the road can be a rough, back-country dirt one, not one of those super-highways we’re all used to driving. Jack had a good night, but awoke this morning very agitated. It may have been the fact that the entire Hospital had absolutely NO HEAT last night. Seriously, they turned the entire system off at the end of October!!! It’s lucky no one got hurt; I was so angry. They had to bring in a portable heater and blow warm air on Jack to keep his temperature steady. The rest of us were freezing. This was an apparent maintenance issue – great. However, I think Jack’s agitation was more from his new food he’s been receiving. Yesterday we were told about Jack’s Lymph drainage problem, and that he would have to be starved for a week to make the problem clear up. Well, a different doctor came in the afternoon and said “B.S., we feed babies, just a different formula”. So they started him on a low fat formula late yesterday. (One of the frustrating things about this is that each Dr has a different opinion and sometimes the Specialties don’t talk to each other. It’s not uncommon for a group of Dr’s to say this and make a change on one of his meds, then two hours later a different Dr does the exact opposite. (We’re arguing and yelling, ‘what the heck are you doing?’, but often we’re just whistling in the wind.) I think Jack was having problems getting used to this formula. He had a few episodes of vomiting and just appeared to have a tummy ache all day long.

After going down on the amount of his feedings Jack seemed to calm down. Robin then came home to get ready for Halloween. We then got a phone call from the Hospital. They said that after reviewing Jack’s daily x-ray, they noticed an air pocket between his lungs, next to his heart. Anyway, with most kids this would be a big deal. They would have low pulse-ox readings, appear ashen in color and would be in obvious pain. Jack, the Iron-baby, was looking at the nurses, watching his mobile and cracking smiles. They performed a quick procedure, inserting a drainage tube back into Jack’s chest, and drained the air out. They’ll keep the tube in a while to let any fluid and/or air come out and relieve any pressures in the pocket.

A couple of bumps in the road and still more proof of this little wunderkinder.

Robin and I are both exhausted and need some rest. Jack is getting better, albeit at a slow pace, and he’ll need us more and more as time goes along. We are constantly worried about what the next “bump” will bring, the little man has been through so much, but know that he’ll get through it. I think our exhaustion is mixed in with anxiety, frustration and just plain anxiousness to finally have our babies together again – at home this time!

In the end though, this is a small price to pay for our son.

TTFN

Saturday, October 30, 2004 8:15 AM CDT

13 Days Post Transplant

From Dad

Jack continues to do a little better, however it's impossible to be in a Hospital and have all good news. I think it's something they teach Dr's in medical school -- never be too positive and, if in front of parents, dwell on the negative. I guess they teach something along those lines in law school too, but I tried to sleep during those lectures.

Yesterday afternoon, while Robin was with Jack, the Dr's came in and said that some tests indicated damage to his Lymph system during the surgery. This is fairly common, from what she was told, when a chest is opened during surgery. The indication of this was the fact that Jack's chest drainage tube was producing more fluid after he started feeding again. They tried to explain the bio-chemistry of this, but honestly we weren't listening, all we heard was Jack has another problem. The fix is to stop feedings for a week and then have him go on a diet (formula) low in fat for six weeks. They stopped his feedings and in about 6 hours his chest drainage had been reduced to a trickle. Shortly thereafter his surgeon came in and overrid that decision and started feeding him again, but on the low fat special formula. So Jack continues to feed until further notice...

Around the same time one of the PICU Dr's came up and talked to Robin about getting a neurological workup on Jack. We've been talked to about this in the past considering Jack's head bleed, seizure and his hand tremors. The neurologist has assessed Jack and tends to spend most of the time noticing that Jack sleeps with his thumb inside his fist instead of outside. He said this and some of the other items may indicate a brain injury (stressing "injury" not "damage", therefore Jack should recover). Then again, he says Jack is only 2 months old by his chronological age (a 31 week preemie) and some of these signs (e.g. the thumbs) are not unusual for a kid that age. Also, he's been on drugs and steroids and has gone through the stress of a heart transplant, so items like the bleed, seizure and tremors are fairly common considering all of this trauma. So, in other words he doesn't know... I've come to the conclusion that neurologists are little more than voodoo scientists and he probably carries a sack of chicken bones in his lab coat. He takes those chicken bones out, performs some type of chant, lights a candle and throws them on the table. The way the bones spread out indicates the diagnosis he'll give to the parents.

All jesting aside though, these are things that we'll keep watching on Jack, but I think we need to give the little guy a chance to heal first. He is on more narcotics than recovering junkies right now and probably has a case of the DT's. They have supressed his immune system to prevent rejection with steroids and other drugs and he has been living on pain medicine for the past 3 months (75f his life). Also, he has all this fluid he's still trying to drain off of his body. Finally, he's only four months old (two months chronologically) and has lived nearly his entire life in an ICU. Give him a chance to live a normal baby life, let us bathe him in love in a nice, quiet, warm home and I bet you within a couple of months that kid is doing long division, reading Chaucer and correcting Mozart's deficits. Also, he'll have his twin brother there to help him along.

Anyway, enough of that rant. I love this little kid and know he is going to do fine. He just needs love and time. After Robin left last night, his nurse and I got Jack all ready for a long, calm night. I was especially nervous because he arrested one week ago and it seems as if things always happen on the weekend. Anyway, about 10 p.m. he calmed down, opened his eyes, followed me around with his eyes and started that double cheeked, eye squinting smile that makes everyone fall in love with him. He was interacting this way with me for about 15 - 20 minutes before he fell back to sleep. It did me a world of good to see this. I know he's okay neurologically, he just needs a little time and a lot of love and prayers.

Other than that Jack continues his slow pace to recovery. He has a stronger heart, not perfect yet, but getting there. He has lost about 75 percent of the fluid he retained. He has gone down to low settings on the respirator and the nitric oxcide and should start to do weaning tests late next week getting ready for extabation. He has gone down on his pressers to low, low levels. He has about half the amount of diuretics being administered to him now. His kidneys and liver are on line and fully functional now. And he has started to show his personality again. He has a few minor setbacks here and there, but all in all, almost two weeks out he's done some remarkable things.

We were told that it would be as long as a recovery period as it was waiting for the heart. I don't think it'll quite be that long. We may not have Jack home by Thanksgiving the way things look now, but we WILL get him home. I can't think of a better Christmas present to our family.

TTFN

Friday, October 29, 2004 9:57 AM CDT

12 Days Post Transplant

From Dad

Jack's Echo came back pretty good late last night. The comment that we received from the Cardiologist is that Jack's new heart "looked absolutely normal" and she wouldn't have known that it went through any stress if she didn't know it wasn't his native heart. It still isn't fully functioning on the right side, but has extremely marked improvement since his arrest last Friday night. Also, all the chambers aren't quite synchronized yet, but it's working that way. She told Robin that his ejection fraction is around 70, which is probably better than most of us reading this. His native heart was giving him anything from 10 to 20BR>
Also, Jack continues to pee like crazy. He is returning to normal size and it's great to see him again. His weight is down to 4.6 Kilo's, it had been up to 5.4 and he started out at 4.1 prior to the transplant. He was peeing so much out last night that they had to back off the diuretics because they couldn't replace some of the minerals fast enough (e.g. calcium and potassium).

Of course Jack can't get through a day without giving his parents their own cardiac problems. I relieved Robin about 9 p.m. last night. I settled in to have a nice long boring night with Jack, just watching him drain his fluids and slowly recover. Well, about midnight he started to have these wild fluxations in his blood pressure. This was like deja vu to last week before his cardiac arrest. His pressure would go from 110 to 62 in a matter of five minutes, and then go in reserve the same way (they want him to be in the upper 70's). Throught the whole thing Jack was sleeping away, oblivious to the copious amounts of adrenaline pumped into his father's system with each blip of the screen. The Dr's and a very industrious nurse kept looking at the lines and the meds being pumped through them. They didn't think Jack was making these pressures go wild, but rather there was a mechanical problem with one of the lines running into his heart, veins or arteries. Maybe it was a kink in one of the lines that was delivering some of the heart medicines in batches instead of continuously?

After checking things out, it appears to have been a line problem. Jack had lost so much fluid, and his heart has improved so much over the past few days, that he had changed the pressures his blood stream exerted against the medicines coming in. He was actually starting to pump his blood back into the lines, thereby not allowing the medicines to reach his system. With a few adjustments to the lines and some added fluid pressure into him, Jack stabilized his pressures and had a peaceful night at last. This didn't occur to around 3 a.m. though.

This poor kid, he had so many pumps, lines and tubes stuck into him that it requires a master plumber's license just to check him out. Other than that, Jack is slowly recovering and weaning down on his medicines.

Cooper is doing just fine. He has been having quite the appetitie lately, gulping down food like he can't get enough. Coop's getting pretty smart too, he lets out this little yelp cry, then frowns, and wouldn't you know it one of his parents or his grandmother jump up and feed, change or just hold him. Could this become a problem??

TTFN

Thursday, October 28, 2004 9:03 AM CDT

11 Days Post Transplant

From Dad

Another peaceful night...Jack and Dad got some much needed sleep at the hospital, however it sounds like Cooper was too excited to have Mom home to go to sleep...all night long. So, Robin's a little tired this morning.

Jack's really putting out the urine the past few days. You can actually feel his forehead now (instead of squishy stuff) and his body shape is starting to return to normal. As a matter of fact, he's putting out so much that he is losing potasium, calcium and magnesium faster than they can replace it. This in return is causing his blood pressures to drop (along with the fact that he is losing so much volume so fast). They are planning on cutting back on some of the pepe inducing meds now because of this. Great news, now Jack can maybe start to get rid of some of the pumps and other equipment hooked up to him! Again, signs that he's starting to feel better.

Jack is getting an Echo done today to see how his new heart is functioning. The left side of the heart is doing fine, it's the right that has been lagging (the part the goes into the lungs). Apparently this is the side that sticks out of the ice after it is removed from the donor. The exposure to air causes it to become stiff and takes longer to become acclimated to its new home. This is all to be expected we're told, so hopefully today will bring good news that the right side is functioning better.

The Cardiologist has also talked about doing a heart catherization tomorrow to see if there are actual signs of rejection. This involves snaking a cath line down one of the veins in his neck into the heart and then grabbing a chunk of the heart for tests. Sounds like fun, doesn't it? Jack will have these done every few weeks for a couple of years and then at least once a year for the rest of his long life.

Small price to pay though.

The only other news to pass along is that Jack has started to eat again! He has been getting just a small amount through the tube, but they plan on increasing this by 1cc/hour today as long as he can tolerate it. Jack did so good yesterday with his trophic feedings (he had 3 BM's in 24 hours) that they think he's ready to start feeding to grow again!

The Lord is certainly working through Jack, even if its through his digestive system.

TTFN

Wednesday, October 27, 2004 9:22 AM CDT

10 Days Post Transplant

From Dad

A very quiet night!!!

Jack seemed to change his operating paradigm last night. Around 8 p.m. his blood pressures started to feather downward. My blood pressure started to shoot upward with this, as this was the sign of Friday night's arrest. Anyway, after tinkering around and discussing things, the Dr's figured that (1) Jack has been done with his load-up of steroids (immunosuppresants) about 18 hours prior and (2) his kideny's are now at or close to 100unctional. The decrease in volume and effect of the steroids on his system combined with a healthy kidney means Jack is ready to make urine.

His blood pressure is now at normal levels (which to me at first looked like low levels based on the readings since Saturday) and is an indication that his whole system is coming back on line. They made some adjustments to his vent and a few of his drips and won't you know, his pressures were steady all night long and he's been peeing like a rock star on a Monday morning ever since.

Jack's still puffy, but is noticably smaller and seems happier. He has had hours of alertness, looking around and checking out his environment. He likes to suck on the tube in his mouth and stick his little tongue out through the tape. It's rather cute. He has also smiled a few times and is really starting to return to the pre-transplant personality.

All of this seems to suggest that Jack is on the mend. He seems to be feeling better and is starting to like his new heart. As all the systems kick on line, he should only start to recover faster.

Yesterday had a few tense minutes though. First, one of his blood clotting levels kept coming back low from the labs. They were worried that maybe the bleed in his brain had started up again. So, to check this out they wanted to do another CAT scan. This is no small chore, since Jack has two respirators and 14 infusion pumps hooked up to him. (The CT Scan is located down two stories.) After assembling the team to move him they noticed seepage from the two holes in his chest where the drainage tubes use to be. Also, they noticed that the one remaining drainage tube was plugged with fibrous blood matter. This caused the move to be delayed and a team of nurses and Dr's tried to plug the leaking holes on Jack's chest. Jack just watched as they worked on him-- it was as if somebody was giving him a chest message he was so calm. The whole thing was probably positive because it drained more fluid from his body.

A few hours later they did cart him off to get the CT Scan. And then 6 agony filled hours later, as I mashed my nails waiting for the results, we got the report that there was no change in the bleed and everything appeared fine.

Cooper got to spend the whole night with his Mommy last night, as Robin went home to actually sleep in a bed. I'll try doing that this afternoon. I'm missing that little guy, he usually falls asleep on my chest. He is really doing good though. He is starting to coo and will probably flip over any day now.

That's about it for now.

TTFN

Tuesday, October 26, 2004 10:26 AM CDT

Transplant Day + 9 Days

From Dad

Happy 4 month birthday Cooper and Jack!

It's hard to believe that it's only been four months with all that these boys have gone through (and their parents), but here we are.

Jack is doing pretty good right now. Yesterday evening Jack's blood pressures were high while he was awake and playing with Daddy. The Dr's got nervous and thought it was a sign of hypertension, so they went up on some of his drugs and vent settings in an effort to keep it more under control. I argued the best I could against this, but had to eventually succomb to my limited (but growing)knowledge of body chemistry.

All last night Robin and I kept a vigil on his lower than normal blood pressures. This was especially nerve racking because it's similiar to how Jack presented before his attack. Anyway, he ended up getting a blood transfusion to increase the fluid volume in his system and now this morning they are going back down on some of the vent and drip settings. Jack seemed to tolerate everything fine and continues a slow recovery.

See what I mean? -- You have to be an advocate for your babies.

Anyway, it's only been four months since their birth. I wonder what we'll be doing four months from now?

Robin and I are starting to feel the effects of staying with Jack every minute since the Transplant. I think we are starting to feel secure enough to go back to shift work, plus our little Coopey needs his parent time (actually we need our time with our little therapy boy). It's a hard thing to not be here though, you always have the pit in your stomach that you'll get a call about Jack not doing so well.

Anyway, this is just something we'll have to work out.

Today Jack is doing well, so we are also.

TTFN

Monday, October 25, 2004 2:32 PM CDT

Transplant Day 8 Days

From Dad

The start of a brand new week.

Jack is doing fine today. He continues to throw off some of the fluids in his body, albeit at a very slow rate. He has put on about 3 pounds of weight (he weighed about 9 pounds prior to surgery, so that's roughly the equivilant of about 40 pounds to me-- in the space of 24-48 hours!) and retained it all since the surgery due primarily to his kidney's briefly shuting down and the shear volume incurred during the transplant. We were warned about this ahead of time, but you can't help but feel for the little guy when you look at him. The first couple of days he couldn't get his eyes shut because of the swelling, his ears stuck out because of the fluid collecting, his chest puffed out to about 2x its pre-surgery size and the skin on his legs were taunt from the pressure.

Of course this must be so uncomfortable for Jack. He has awaken a few times the past couple of days and sometimes he starts to cry. You can tell he is so uncomfortable with all this fluid in his little body.

We are making progress though. Two of the three chest drainage tubes were removed yesterday and the last three days have actually been negative fluid days, where he has more out than in, and his weight has started to trend downward. So, I think we're on the way to recovery from this issue.

The idea is to take it easy today and just let Jack drain, so urine is still the name of the game. Another Echo is scheduled for later today to see how the heart is doing and see if we can get any more insight into the cardiac arrest a few days ago.

Jack is so incredible though, if I didn't see them banging on my son's chest with my own eyes, I would never have known he had been in trouble. He has seemed to bounce back and is on the road to recovery. We'll take it slower this time though, as some of the Dr's think that he was weined too quickly from some of the drugs and that may have been a contributing factor to Jack's sudden collapse. That's one of the reasons why Robin and I are staying around the clock with Jack, we feel we need to be his advocate and make sure all the different Dr's don't try to set some kind of land-speed record with him.

About 72 days ago, when we were just starting this journey, the family of a transplanted child (the cartwheel girl) told us you have to be an advocate for your child and challenge the Dr's sometimes. So true. One of those lessons in life -- listen to people who've been there and take those hard learned lessons to heart. I'm not suggesting that the Dr's did anything wrong, they have saved my son's life and are quite brilliant. All I'm saying is that Jack is their patient, but we're his parents and we know more about him then they do.

Another interesting story -- quite inspriational to Robin and I -- I was riding the elevator down yesterday and an older couple got on with me. The women said to me, aren't you the guy whose son got a heart transplant? I said "yes, he's doing good, but had an incident this weekend and we're a little scared." She said that their son had a heart transplant done 18 years ago when their son was 16 years old. They conveyed their absolute trust in the Dr's here and said that once they got him stabilized on the drug therapy, things worked out just fine. Their son grew up, went to college, got married, started a career and now has his own family. He is living an active, ordinary and full life. It's exactly what we needed to hear.

Anyway, pray we have many, many, many more days like today.

Thanks,

TTFN

Sunday, October 24, 2004 3:08 PM CDT

Transplant Day plus 7 days (supplemental)

From Dad

Almost exactly 7 days ago is when we starting packing up and getting ready to send Jack down to the O.R. for his transplant surgery. Mom was holding him and we were talking to him. Jack was wiggling in Mom's arms and smiling as we told him about the mountain. The nurse picked him up and put him in his bed, getting all the drug pumps and other stuff ready for the trip downstairs. They wanted Jack in the O.R. a couple of hours ahead of the transplant to get his centeral access lines ready and for anesthia to get their job started.

We rode the elevator down to the third floor, at the swinging doors into the O.R. suites we kissed Jack and told him he was strong. He smiled at us, sticking his tongue out from behind the tape keeping his vent tube secure.

The past week has been full of every emotion available. We were almost calm, yet cautious as the surgery went on. We were joyful as Jack returned to his room and stabilized. We felt as if a ton had been lifted from our shoulder as Jack quickly recovered from the surgery and started his climb down that mountain. Then we were fearful and distraught to the point of losing physical control when Jack arrested on Friday night (early Saturday morning). The past few days we have returned to cautiously optimistic as Jack comes back to his road of recovery.

Today he has been having a great day so far. He has been urinating more and his pressures have been great all day long. We are taking it slow, but he has managed to come down on several of his drug drips and his vent settings.

We'll start this week off pretty much where we started last week off. However, now we know more on how Jack reacts to drugs, that he might be (still don't know for sure) have a rejection problem with his new heart and that he is starting to take the fluid off of his body. He still looks like a sumo wrestler, but at least his little ears don't stick out so much from the fluid retention.

Jack's doing better, so we are also.

Thanks for the prayers over this stress filled weekend. Please keep them coming.

TTFN

Sunday, October 24, 2004 4:13 AM CDT

Transplant Day + 7 Days

From Dad

It was about one week ago exactly that we got the call -- we have a heart.

Jack successfully went through the transplant surgery and we are now in the recovery phase.

We told him right before the closed the OR doors to us, "Jack, it's time to climb that mountain that we told you about. Just remember Mommy and Daddy are here and we love you."

Jack has climbed it. We thought that on the other side the valley of milk and honey would be just a skip away. However, it turns out on top of this mountain there are other hills and obstacles before you get to that promised valley.

Jack is getting there. Yesterday was a scare, but he seems to be coming out of it. He has managed to have more fluid out than in for two days in a row now, which is excellent considering everything his body has been through. However, he is still up more than a kilo and is quite puffy. The drainage tubes coming out of his chest have a very slow trickle of fluids coming out.

I love this littel guy. We've spent most of the past day holding his hand and telling him what a big, strong, brave boy he is. He has lately started to wake up a little and look around.

We really need your prayers to keep Jack's recovery going and to start to gain some momentum.

Thanks

TTFN

Saturday, October 23, 2004 4:05 PM CDT

Transplant Day + 6 Days (supplemental)

From Dad

We're over 12 hours since this morning's arrest. I'm not sure to call it a cardiac arrest or what, but whatever it was is something I'd like not to repeat. Baby Jack required about 20 minutes of CPR.

The Fellow who did that initial CPR saved his life, there is no doubt about it. We thanked him. It turned out to be his last day on the unit, he's transferring to the NICU now, so I guess we Corbo's know how to give a send off!

Here's the latest. Subesquent lab results and Echo's indicate that he may be going through sometype of acute rejection of his heart. Also, levels of one of the immnuosuppresants, cyclosporene, were at a toxic level a couple of days after the transplant, due to Jack's initial kidney failure, but plummeted to very low levels soon after full function was restored. One of the Cardiologist's husband is a bone marrow transplant Dr, and he stated that he see's this type of reaction sometimes in his patients from the rapid changes in the level of cyclosporene.

Even with this though, they suspect that Jack is slightly rejecting his heart due to some of the EEG results. However, blood results don't confirm this hypothesis (his white blood cell count is actually decreasing). I guess in the end it doesn't matter, the course of treatment is the same and the prognosis is the same also.

So as of now, Jack is doing better and is expected to be back on his road to recovery as long as there are no more of these types of "bumps in the road".

He was visited by a Neurologist again today and a CAT scan was performed. The scan showed no more bleeding on the brain and no seizures. Jack was presenting with shakes, which indictated some type of neurological injury (possibly). Robin and I think that's a bunch of hogwash, we know Jack is just reacting to the drugs he's on and the fact that he is a neonate.

God was with me and Jack during this episode. He continues to be here. I was given that "footprints in the sand" prayer along time ago, the one where a man is walking with Christ looking back over the course of his life. His life is inprinted in sand where there are two sets of footprints, intermixed are periods where there are only one. The man asks why did you abandon me Christ, those times when there are only one set of footprints were the most trying times in my life? Christ responded that He did not abandon him, but rather was carrying him during those times. All the other times, where there were dual footprints, were times when Christ was walking side by side with the man.

This morning there was one set of footprints in my life. My biggest fear was that Christ was here to comfort me while taking Jack back to his heavenly Father. I was mistaken. Looking into Jack's sandbox I see a heard of footprints that are carrying this little boy through this. This is his Army of Angels. I also think Jack is here to stay. The Cardiologist said Jack is certainly a "strong" boy going through all of this. He is.

I should mention Cooper also. Ever since Robin and I found out we were having twins, we were told there is a special bond between them that non-twins cannot understand. We've seen signs of that in the past, but today was proof in my mind. Cooper was sound asleep next to Mommy when I made that phone call this morning. He felt perfectly safe and secure and was recovering from his own little upper respiratory infection. Today in talking with Grandma, Cooper is just not the same and appears anxious. His cold is back also. You can just tell that there is a bond between those boys. When Jack isn't doing well, Cooper's behavior changes as well.

We know that when Jack gets home, Cooper will probably be his best form of therapy. I can't wait.

TTFN

Saturday, October 23, 2004 4:36 AM CDT

Transplant Day + 6 Days

At 12:30 am this morning I was sleeping in the waiting area about 50 feet from Jack's room. A nurse shook my shoulders, telling me that Jack was having blood pressure issues. I got up and went into his room. There were alot of people in there. The ICU Fellow was bagging Jack and ordering drugs to get his pressure up. I looked at the monitor and it showed a pulse, but no blood pressure. Obviously something wasn't right, then I heard him say start chest compressions. My mouth became instantly dry. I watched over the next five minutes as a nurse bagged 100% oxygen into my boy and the Dr compressed his chest that has a scar down the middle from his shoulder blade to his sternum. The Dr said he was getting tired and had a differnet nurse take over. He paged the Cardiologist, the Surgeon and the Cardiologist Intensivist. I walked out of the room barely able to breath but called Robin and ruined her day. She was at home taking care of Cooper with her Mom. She asked me if Jack was going to be okay, I had to reply "I don't know", it was probably the hardest and most painful answer to my wife I've ever had to give.

I went back into Jack's room as they continued to do chest compressions. I called Robin again and told her to get in here. She had to call a dear friend to bring her in. In that time the Cardiologist Intensivist arrived and took over for the ICU Fellow. He noticed Jack had a pulse and stopped CPR. They re-established his blood pressure. The Surgeon arrived and took over. She assessed the situation and made sure he had good pressures. She determined that we needed constant blood pressure readings, so she had to put an arterial line into Jack. She started this and the Cardiologist Intesivist took over.

Then the Cardiologist arrived. I was soon told, as the Cardiologist was assessing the situation, that Jack was stabilized and had a pulse and blood pressure on his own. OVer the next two hours Jack had numerous labs and blood gases performed, as well as an EEG and two Echo's on his new heart. The gases and labs?-- amazingly they came back as if nothing had happened-- all normal to optimal. The Echo's showed a heart that had just had CPR performed on it, but was progressively returning to normal even as the Echo wand was on his chest. Although, it isn't quite back to where it was earlier today.

During this Jack's belly and abdomen swelled considerably. It was the air that was forced into him during CPR. After much discussion it remained a mystery as to what caused this episode (heart attack?) from happening. Literally, up until five minutes before I was awakened, Jack was progressing spectacularily. The Surgeon suspected acute rejection of the heart. However, some of Jack's gases and labs did not fit this profile. When the EEG was complete, it showed decrease electrical signs, meaning it was probably rejection related.

They have re-started some of the drugs on Jack and loaded him up on immunosuppresants.

They will perform another Echo and a CAT scan tomorrow to follow up on things.

The Surgeon and Cardiologist both agreed then that this was a "minor" bump in the road and that it would probably have no long term inpact on Jack's life or his recovery.

Robin arrived here about half way through this episode.

We now await, watching our little boy and making sure he is okay.

We prayed alot during this...it's something a parent should never have to see...10+ people crowded around your little boy pressing his chest down.

I was pushed to the back of the room during most of this episode, however I was told that until Jack was sedated, he was looking around at everyone, even while they were compressing his chest.

Later the Cardiologist told us you obviously have a strong boy here if this is what it took for us to know he was having rejection problems.

An understatement, but true.

I was probably never so close to God during this, begging him to help little Jack. While distraught, I felt His presence and think he was holding Jack's hand during this. We pray for this to continue.

I don't know alot of things in life. I don't know why Jack has to go through all of this. I don't know why God chose us to have such a boy hero.

I do know that Jack's a fighter, and we will just keep helping him along.

TTFN

Friday, October 22, 2004 8:34 AM CDT

Transplant Day + 5 Days

From Dad

Finally got to talk to the Neurologist last night around 8 p.m. To be frank, it wasn't worth the wait. He said that he didn't know what caused his bleeding in his head or his seizures, but did know that it wasn't a stroke, the bleed wasn't getting bigger and that he was not having any mini-seizures that would not otherwise present clinically. Good news.

The Cardiologist and the Surgeon basically conveyed the same thing before hours earlier, however always with the caveat that "I'm not the expert". Anyway, the theory is that the bleen occured becasue of the poor kidney function immediately after the transplant. The seizures are probably related either by the bleed being an irritant and/or his high level of immunosuppresants in his system.

Jack hasn't had any seizures in the past 24 hours and up until the last two, has progressively been producing more urine. Yesterday he was only up 100 grams of fluid, so far today he is negative, so hopefully his puffiness and all the associated problems with fluid retention will start to go away.

Jack is a fighter and is doing pretty good.

We don't know why this whole thing happened to his native heart. We only hope that little Jack gets better so we can get him home.

TTFN

Thursday, October 21, 2004 3:48 PM CDT

Transplant Day plus 4 days

From Dad

We got a call about 12:30 a.m. this morning that Jack experienced a seizure on his right arm. They were going to perform a stat CAT scan and call us back to see if there was any serious problem. The seizure was small and easily stopped, but the cause was unknown. About an hour later we got a call saying the CAT scan showed all normal. Later this morning, around 10 a.m. we received another call, saying Jack experienced another right side seizure. Also, upon further review by another MD, his CAT scan showed slight bleeding on the right side of the brain. At noon Jack was carted off to perform another CAT scan and also have a EEG perfomed. The second CAT scan showed there was bleeding on the right side-- operative word "was", in that the bleed has not grown and the age of the blood is not known. Jack has not had any more seizures since.

We have been here since noon waiting the results and the analysis from a neurologist.

One of the Cardiologist has stated that he has very high level of one of his immunosuppresant drugs in his system. This is a result of his kidney's not working properly since the surgery. One of the side effects of this drug is it has been known to cause seizures. Also, the blood on the brain is a very frequent by product of being on by-pass during the surgery and/or for prolong periods of blood thinner (heparin), which Jack was on while waiting for a heart.

Also, the blood is on the right side of the brain, which if it were related to the seizure, should've been on the left side.

So the working theory is that the two are not related. That his seizures are a byproduct of elevated immunosuppresants in his blood stream and the blood is from before from the surgery or his heparin. We probably would not have ever known about the blood but for the seizure causing the Dr's to look. We are awaiting a neurologist to confirm all of this.

The Cardiologist, not the expert, but in her experience thinks that regardless the area and the limited amount of blood will probably not have a long term effect on Jack.

While this was going on I brought Cooper into the Dr's office because he just wasn't feeling good. After being weighted in at 11 lbs 9.5 oz, he proceeded to mark his territory by peeing everywhere in the Dr's office. Cooper has a mild upper respiratory infection. We are to treat him with more fluids, lots of love and watch his temparture. He is being loved by Grandma right now.

Needless to say, we have elevated blood pressures today.

We continue to ask God for help and guidance as we go through this period in Jack's illness. Today was a wake up call, the battle still wages and we must be vigilant.

I'll let you know more when I do.

TTFN

Wednesday, October 20, 2004 1:49 PM CDT

Transplant Day 62 hours

From Dad

Jack is closing in on the 72 hour mark and things are still pointed in the right direction. The Dr's continue to monitor his blood gases and other indicators and make minor changes to his medications. The good news is that he continues to go down on the EPI, which causes blood vessels to constrict. This is done to help keep his blood pressure up and thus oxygenate his organs as much as possible. The side effect of this drug though are his extremeties receive less blood flow and are consequently white/blue and cold. In the past couple days they have decreased the EPI considerably, and you can tell by his little hands and feet are now pink and warm.

EPI also seems to cause the kidneys to decrease in function. This drug and the surgery itself have pushed Jack's kidney's into failure mode. Everyone believes this is temporary and will resume as soon as more blood flows to the kidneys. The unfortunate side effect is that Jack is starting to puff up with all the retained fluids. He has probably put on 2 - 3 pounds of fluid since the surgery and will have to expel this soon. The worry is that if his kidney's don't start working soon, it'll cause his potassium levels to go dangerously high and possibly affect his new heart. Therefore, mechanical intervention may be needed in the form of kidney dialysis. Of course, this is another entry into the body, directly into a critical organ, and the possibility of infection goes up.

So, as I said earlier, urine is the name of the game. Jack produced a drop or two the first 48 hours. So far today he has produced about 50cc's, so things do look better. We are hoping and fairly confident that this little boy will kick it in overdrive soon and start producing.

We thought the hard part of the climb was over after the transplant. There still are some minor hills to overcome we're finding out.

However, Jack is strong and has an Army of Angels at his command. We are at his bedside constantly telling him how strong he is (he's alert enough to see us now). We brought in a little music maker that plays the sounds of rushing water. I know it works on me, since I'm in the john every hour now, so hopefully it'll help little Jack produce urine as well. I even tried dipping his hand in warm water last night, an old college prank. It didn't work then, but maybe I'll try it again.

Robin and I spent the night at home last night. We both got some much needed rest and bonding time with Cooper. He was definitely experiencing some anxiety over the past few days with his scheduling being changed (Mom and Dad weren't there at the appointed time). We even thought he was getting sick because he was sneezing and coughing a lot. We thought about bringing him into Urgent Care last night, probably because we are overly cautious now a days, but decided to wait until the morning. I got up about 4 am to feed Coop and then let him fall asleep on my chest. This is his favorite position and he slept soundly for 3 hours. When he woke up he was hungry and needed a change and soon after this he looked and sounded better. No more sneezes or coughs and his breathing was quieter. Maybe he needed a little time with Dad, but whatever it was it worked and all of us are feeling better about it.

For now we continue to watch Jack recover. The feelings of optimism and positive anticipation of the future remain as we traverse these few remaining hills. We continue to ask God to guide us like a shepard and are confident he will. We would like to ask you all to also to continue to pray for Jack and a safe and speedy recovery.

Jack has entered a special club, one that no one wants to join but everyone in it owes their life to it. He has been an inspiration to all of us and will continue to be for all of his life.

Watching is easier than waiting however; we're one step closer to bringing him home.

TTFN

Tuesday, October 19, 2004 8:23 PM CDT

Transplant Day +46 hours

From Dad

Jack is doing pretty good, his new heart continues to improve in its function and he is even awake now. The vent settings are down and there is actually more room in his suite as some of the pumps and equipment were able to be moved out. The watch word is still urine, as his kidneys have yet to kick in. We aren't quite at a stage where proactive measures will need to be taken, as the Dr's think they'll kick in soon, but it something to continue to watch.

When I got here this morning Jack was sleeping. Mom and I went over him head to toe and when I said something to him, he suddently opened his eyes wide. It kind of scared us to tell you the truth, but it was Jack waking up to the sound of his old man. It was great.

Robin, the super mom, kept watch all night long, but she was feeling so confident that she took time out to write a great post last night (see the history) and actually catch a little shut eye.

I echo Robin's account, we've had angels watching over Jack for quite some time now, especially during his operation.

We continue to pray to and praise the Lord. Jack isn't out of the woods yet, but continues to improve. We still need prayers to get him fully recovered from the surgery and receptive of his new heart. This will actually be a lifetime vigil, but as Robin said, we have an army of angels to help and guide the way.

Thanks for helping us recruit, train and deploy this army, and please keep praying.

TTFN

Monday, October 18, 2004 10:40 PM CDT

From Mom

Nearing 24 hours from transplant

Mom is here as Dad is now at home comforting Cooper and getting some much needed rest.

We are nearing 24 hours since our Baby Jack's life has been eternally changed. Not surprising, Jack has continued to pleasantly amaze his doctors and nurses. This evening he started beating his gifted heart on his own without support. They've continued to go down on the medications that are needed to assist the heart. His heart was initially what they called "stunned" as it was/is trying to recover from the shock of being transferred and kept cool prior to surgery. It all takes some getting use to as is to be expected. In the meantime his blood pressures have stabilized, his color is good, and he is starting to move around. The doctors don't really want him awake too much so he was just given a little more sedation so his movements are minimized.

I was talking with him and he was moving his eyes and his legs a little bit. He just heard an update on television on "Little Jack Corbo's condition" so I think he stirred a little as his nurse and I were talking about the newly-found celebrity status he and Cooper have.

We just want him to rest over the next couple of days as his body recovers from the major surgery and trauma its been through over the past 24 hours. We'll need to tape "Oprah" for him as he watches it religiously everyday, waking up from his afternoon nap to catch it. Right now he's found relaxation in the latest "Kenny G" CD that one of his nurses brought him.

As time passes Todd and I have reflected upon the last 24 hours for our family. My childhood friend called me as I was headed back to the hospital to relieve Todd and asked me about the wait during surgery. Todd and I both were amazingly calm during the surgical wait. It's as if the Angels were sitting on our shoulders as we sat and prayed for Baby Jack and his brother, Cooper. We believe that Jack was carried into surgery in the cupped hands of Angels as another group delivered the Angel baby's heart. As much as we have been through since these beautiful babies were delivered to us, and there have been ups and downs, this has been the most peaceful we have felt.

We were able to spend the day with Jack prior to leaving for the operating room. I held him close all day as he was watching his Baby Einstein video, another favorite. He did his usual flirting and smiling. As the aneathesiology (sp?) team arrived to take him down to surgery for prep, Jack was entertained by all the comotion in his room, smiling back and forth to all the folks surrounding him. He was moved to a warmer so that post-surgery he could be kept warm without the use of blankets, so now at 9 pounds plus, he certainly fills every inch of the little bed. We rode the elevator with the team as we continued to talk to him. Not once did he ever look anything but his calm, cool and smilin' self. It was Mom and Dad who had the harder ride down two floors. It was Mom and Dad who struggled to stay standing as they rolled him away through the metal doors. And it was Mom and Dad who asked the Angels to hold him tight until they brought him back.

Shortly after that, Dad went to pridefully talk about his two bundles of joy to WCCO television--thanking the donor family for their Gift and hopefully getting the word out to help the remaining 10 plus babies in the U.S. that need hearts (to see this interview go to http://www.wcco.com).

Shortly after 10 p.m. the surgical team arrived to tell us they were extremely pleased with how the surgery went and Jack's response and condition. His Gift heart is the size of a walnut and his native heart had grown to three times that size. They told us they were testing the heart for all types of viruses, but to be prepared to probably never know what it was that attacked his heart. Whatever it was, we all know it was pretty bad.

We waited about an hour for Jack to get cleaned up and settled in his room. We were prepared for the worst. When Jack was transferred from Children's to the U after the doctors discovered his heart failure and its subsequent dilated size, he was chemically paralyzed and heavily sedated so as not to work his heart. That point in time was the most difficult to see Jack. So we were prepared for the worst after his surgery. We were pleasantly surprised at how well he looked and currently looks. He's a little puffy and has an army of tubes and lines in him, but he's still our Baby Jack. I am certain there are wings around his bed as the Angels continue to hold him.

We are so thankful to so many who have given tirelessly to the care of our boys. From the doctors, nurses and caregivers, to the unknown faces of people we have never met, to the neighbors and all our friends and family who have offered healing hands, words of comfort, words of wisdom, prayer chains, and those who spread the word about Baby Jack and his loving twin, Cooper. We are eternally thankful for the unselfish kindness of others. We are eternally grateful to the donor family for their unselfish act of kindness and life. We are thankful to my Uncle Bob who passed on Friday and whom we know, had a special talk with God when he arrived that assisted in helping the Angel heart to find Baby Jack early Sunday morning. Thank you God and thank you Uncle Bob.

Our boys feel the love that surrounds them. They are thriving because of it. We pray that they will grow to be exceptional human beings because of the love, care and support they've received from so many from the time of their birth and beyond.

Cooper continues to provide love, entertainment, sleep deprivation and poopy diapers. He loves his brother with his whole little heart and continues to act as if his other half is missing. But we talk to him about Jack and tell him that he's coming home soon.

So in closing, Thank you to ALL. We will continue to provide updates as we still need continued praying...keep it coming...it gives the Angels energy.

...And we know Baby Jack sends his love and smiles to all...he is the Jack of ALL hearts.

Love from Robin and Todd, and Cooper too.

TTFN
So as another evening closes, a peaceful calm remains

Monday, October 18, 2004 5:09 PM CDT

Transplant Day +18 hours

From Dad

Jack continues a slow but positive climb upwards. His blood gases are coming back with better numbers and he is doing more of the work himself, less of a need for the vent or the pace maker.

He's even down to one nurse. Last night he had two very busy nurses and a two full time Cardiologist that would switch off watching Jack. The room was full of people, the garbage had to be emptied twice, it was so full of tubes, etc..., the floor had drips of blood on it and there was general tenseness in the air. Now, he's down to one nurse and all the Cardiologist and Surgeons are off at home or with other patients. The waste baskets still have alot of stuff in them, but the floors are clean, the lights dim and there is Beethovan playing in the back ground.

Jack has made a couple of movements on his own. I was talking to him, telling him he was such a big, strong boy and he twitched an eye lid. A couple of sentences later he moved his left arm. The chemical paralysis he was under is starting to wear off.

We have a ways to go and certainly can't open the champaign yet, but all trends are positive right now.

One thing I forgot to mention last night, Jack's old heart was given to Pathology to exam. They will do a battery of tests on it to see if they can determine the cause of the cardiomyopathy. However, we are all doubtful that the cause will ever be definitively know.

The staff here at the U is incredible. For the past 72 days I have purposely avoided making friends here because I didn't want to be here. That was a mistake. They worked so close together and with such teamwork, seemlessly handing off cares and adjustments it was incredible. The skill of the Cardiologist and Surgeon are exemplary. All of this and they treated Jack as the very special little boy that he is.

As I've said before we have been blessed in so many ways.

TTFN

Monday, October 18, 2004 12:44 AM CDT

Transplant Day 14 Hours

Jack Robert continues to march forward. He has 14 infusion pumps hooked up to his body, two types of ventilators, several drainage tubes and numerous sensor leads. It takes a Phd to keep track of the maze of tubes, wires and other items. However, the surgeon took a look at him again this morning around 9 am and made a few changes -- all towards the positive. We are far from out of the woods, but Jack's signs are trending positive.

It seems that urine is the watchword for the next 48 hours. This is a sign that his kidneys are functioning again.

I think the danger of the EKMO has passed.

Robin is at home with Cooper now, bless his little soul. I'm sure he feels so much better just with the gentle touch of his loving mother. Robin will come back in to relieve me later this afternoon.

I think the WCCO website has a copy of Jack's debut last night and a link to this website. I hope that this little segment raises the awareness of the need for organ donation and helps celebrate Jack's second chance.

Jack is a fighter and we're so proud of him. God has blessed us with his and HIS presence throughout this experience.

TTFN

Monday, October 18, 2004 7:48 AM CDT

Transplant Day +9 hours

From Dad

Jack's made it to daylight without any serious complications.

The good news is that he has avoided going on EKMO (sp?), which is a bypass type machine that would've involved cracking his chest again. This is a very serious stop-gap measure, from what we've been told. One of the serious, although I don't know how common, side effects of the EKMO is bleeding on the brain. Thank the Lord Jack has avoided this. Also, some of his blood gas levels are starting to approach normal, but not quite there.

Jack's new heart though has not yet fully settled into it's new job. His right ventricle is not fully functioning and he is not putting out enough urine. They are worried that he's kidney's are backed up with blood due to less than optimal blood flow. Jack is also starting to retain alot of fluid, as his body is starting to puff up. He looks worse now then he did after the operation.

The Cardiologist told us that this is all to be expected. The act of taking an organ out of one body, putting it on ice, flying it across the nation and then putting it into a 9 pound baby is a little stressful to that organ. Probably the biggest understatement I've heard yet. They tell us that this takes time, indications are that he'll pull this all together but that we're talking days, not hours.

A small price to pay, albeit a rather gut-wrenching one.

Our little Cooper had a rough night from the sounds of things. He knows somethings up and was fussy all night long not knowing where Mommy, Daddy or Grandma were. Robin's heading home soon to see and reassure him.

We are so thankful for this. Nurses come up to us and hug us and say congratulations. It really is like a second birth for Jack, a second chance at life.

Our little boy is a scrapper and will get through this.

We pray that He holds his little hand the whole journey.

TTFN

Monday, October 18, 2004 1:19 AM CDT

Transplant Day +3 hours

From Dad

If you haven't seen the glorious news, please read my last two posts...Jack received his heart last night!!!

We pray for comfort to the donor family. We are so thankful to them. Their selflessness has given renewed life to our son.

Jack made it back to his room last night at about 11 pm. The surgeons were very pleased with the operation and his reaction so far to the new heart. One of the chambers is still having a more difficult time coming to grips that it's in a new body, but as time passes it's getting use to Jack.

Jack looks better than we thought he would, but is still somewhat of a jigsaw puzzle full of wires, tubes and pumps. The next 24-48 hours are plain crucial, but all indicators are that he'll do fine. His blood pressure is steady! He has loss alot of blood, but is still pink and warm. His heart has it's own beat and only needs the help of the pacemaker to keep it steady. We think that will slowly be weaned.

He has started his immunosupressant drugs already.

He seems to be doing good enough for the surgeon and cardiologists to go home . . . always a good sign!

We have been advised to stay here though, just in case.

I hope people got a chance to see Jack on WCCO last night, he's a superstar!

It's hard to see your baby with his chest full of bloody tubes and wires, but we are steadfast in our love and belief in baby Jack. This is the first step to bring him home. Our goal is to get him home for Thanksgiving...exactly when a family should be reunited!

TTFN

Sunday, October 17, 2004 6:43 PM CDT

Day 72 - PM

From Dad

This morning we received the word we've been waiting for. The joy of the phone call was equally matched by the sorrow we knew the other family must be experiencing right now. We are so thankful and awe struck at their unselfishness at such a time. We pray God is with them and hold their hands as they heal. We want them to know that their act has brought renewed life to Jack and probably other babies as well.

Jack finally went down to the OR about 4 pm this afternoon. Immediately before going down we held and hugged him. He watched his Baby Einstein video and fell in and out of sleep on Mom's lap. About 10 minutes before they came to bring him down he was wide awake, he looked at me and gave me the biggest grin I've seen. Then, when I said "Rob look!", he started to giggle as if that were the funniest thing he's ever heard.

A few minutes later Jack was put back onto his bed and injected with a drug that heavily sedated him. We walked with him down the hallway to the OR and kissed him good bye. We prayed and God was there. God is holding little Jack's hand right now.

An email from someone on this board sparked an interest in WCCO-TV. They arrived about 5 pm and interviewed me about Jack and Cooper. I think they'll air the interview after the Viking game tonight (around 10pm). I don't know if I was coherent in my interview, but I tried to get the message across that organ donation is a Holy Gift of Charity and the Gift of Life. I appreciate the interview and the person who sent the email- thank you. I think they'll be a follow up to the story sometime tomorrow morning.

The heart arrived at the U about 6 p.m. I just received a call about 6:30 from the OR that Jack's chest is open and he is on by-pass. They will soon be taking his heart out and putting his new heart in. They expect the operation to be finished sometime around midnight - 1 AM. From all indications, Jack is doing superb, as if he would allow for anything but!!

Cooper is at home being taken care of by one of our dear friends, who just happened to be visiting this weekend. Little did she know that she would be shanghai'd into baby sitting duty for Cooper. However, she is a great friend and jumped at the chance. Coop's doing good, but as we said our good-bye's this morning to him you could tell he knew something was up. (Grandma had to fly back home for her brother's, Robin's uncle, funeral which is tomorrow. We joked, as she was getting ready to leave yesterday, that this would be a perfect time for the heart to come in. Grandma, who we had planned to baby sit Cooper while Jack was getting his heart, would be away and we would have to scramble to find some help. But as we are learning, God puts people in your life at certain points in time for a reason.)

That's about it for now. The emotions in us are impossible to comprehend now, but we somewhat feel calm and assured that this is His plan.

I'll keep you informed.

TTFN

P.S. If you haven't seen this morning's message, check it out and Praise the Lord!

Sunday, October 17, 2004 4:06 AM CDT

Day 72,

From Dad

WE HAVE A HEART!

Our prayers were answered at 3:30 a.m. this Sabbath.

PRAISE THE LORD!, PRAISE THE LORD!, PRAISE THE LORD!

We pray for the family who is giving our son the Gift of Life. Please pray with us. May God be with them.

We now turn our prayers to the surgeons and her team and ask God to guide them in the procedures.

We now ask God to watch over our little boy and allow his body to go through the operation and accept the new heart.

We ask you to pray and pray that little Baby Jack can accept this heart and get through this operation strong.

Jack is approaching this from a position of strength. He is very healthy at this point; he's doubled his weight since being there, has no infections and is doing great. The heart is from out of state, but is reported to be of the highest quality and best size.

Robin's Uncle Bob passed away on Friday, we thought that maybe he was the tipping factor as he had a personal talk with the Lord as he passed through the pearly gates. Thank you Uncle Bob!

We have to get ready now and go see Baby Jack before he goes into the procedure. We have such racing emotions it's hard to concentrate, but we are from the bottom of our souls so thankful.

I'll post later, please keep praying!...

Thank you.

TTFN

Friday, October 15, 2004 5:06 PM CDT

Day 70, Ten Weeks

From Dad

Jack is doing good, continuing to tolerate his feedings and is starting to gain some good weight again. He is definitely growing, just by looking at him you can tell he's longer.

He's a good boy, loves laying in Mommy's lap and watching his video's or Dr. Phil.

No changes to anything today, one of those rare days where everything is normal.

He was recertified again today, for the fifth time, by the Transplant Coordinator (they do it every two weeks). So, he maintains his position on the list and is just waiting for a heart. He actually had an Echo done a few days ago, we didn't hear anything about it so figured it was pretty much "same as last time", but we are having one of the Cardiologist check on it now.

Cooper is doing fine, he definitely has his days and nights mixed up now...he's sleeping all day long now but still demands to get up every three hours at night. Oh well, we'll get this straight one of these days.

We've been thinking about appealing to the local media to raise awareness on organ donation. Frankly, that's about all we can do to influence the wait time here. Just starting to kick that idea around.

That's about it for this day. Another day in, Jack is fine, so we are fine.

TTFN

Thursday, October 14, 2004 5:01 PM CDT

Day 69

From Dad

Here we are...at the apogee of the bell curve...the national average wait time for children under 1 age, type O blood and with a 1A status is 69 days. Jack has reached that average. That must mean the heart is coming soon, right?

Jack is 111 days old and has yet to get out of the Hospital. In the past 69 days he gone from a chemical induced paralysis, with his heart operating in such a critical condition that we felt a priest was necessary, to growing and gaining weight, to possibly needing a surgery to remove part of his intestines and finally his present condition of growing, feeding and being a "Mr. Smiles". Jack has shown more grit than any drill sergeant I've ever known. He routinely goes through procedures that would cause most adults to cringe. And in the end, he's all smiles and giggles and loves to watch Oprah. He's looking around and focusing, developing as a normal infant should. You put an obstacle in his path, and without even knowing what to do, he jumps over it with a double chin grin. He has shown me heroism, he has demonstrated to me determination, he has taught me parenthood and he has proven the power of absolute love. He is our gift from God.

As you can tell I'm a little proud of that 9 pound bundle of boy.

We live in the constant fear that tomorrow he'll take a turn for the worse. We live in the constant hope that tomorrow he'll get his Gift of Life. We balance each hour between these two extreme emotions. We are buoyed by the strength and prayers offered by our friends and family. We are amazed at the love and support God has spread out in front of us.

All we want is to bring both of our boys home and raise them to be men. All we want is to fulfill the sacred obligation and responsibility God has given us. All we want is to wake up, look at Cooper and Jack as they cheerfully go through their childhood, and make the careful and balanced plans to guide them into adulthood. All we want is to see them enjoy, embrace and love life as much as we do. All we want is to see them healthy and happy as they sojourn through life.

We are resolute. We will get there. We know God has a plan and believe in Him. We are stronger because of this and because of you listening to us. We are better parents because of our children.

I have been looking forward to this day for some time now, mostly because I thought we'd be on the short side of the national average. I guess we won't, but we are a day closer to the Day.

Thanks

TTFN

Wednesday, October 13, 2004 4:24 PM CDT

Day 68

From Dad

It's turning more towards winter outside. Jack was born in the middle of the summer, here we are almost two seasons later and he still has yet to make it home. I guess that makes his eventual homecoming all that more sweeter.

Jack is having a good day. All the blood tests were completed last night and came back normal (a few minor adjustments, but at this point in the saga it's hard to keep track of frankly). The Dr's moved his feeding up a little more today and he is finally back to where he started about a month ago. Hopefully now he can start to put on some more weight.

Robin decided to buy a Halloween costume for Jack last night instead of assemble it. Now Jack and Cooper will be set for their first Halloween. Cooper didn't know what to think as he had to model not only his, but his brother's as well. We'll get some pictures.

Speaking of those, take a look at some of the new ones Robin posted last night. They're pretty good. You won't be able to tell the difference between the twins in the last one except for that damn tube sticking out of Jack's mouth.

Another day in, a day closer. Baby Jack is holding steady and his parents are therefore doing fine. We keep thinking that tonight when we go to sleep we'll get awakened by The Phone Call...maybe it'll be tonight?!?

Thanks for being there.

TTFN

Tuesday, October 12, 2004 6:25 PM CDT

Day 67

From Dad

**New pictures posted**

Jack had a pretty good day. His central line in his left arm is working fine. After an inspection by a Radiologist last night they discovered a kink in the line and after straightening it out didn't have to replace it. However, some of the drugs being pushed through it are leaving a residual on the tubing, causing abnormal readings on his blood tests when they take it from that line. Consequently, they had to poke him three times today to get some blood to perform an uncontaminated test; each poke failed and finally Robin said enough is enough, and we'll have to approach this issue again tomorrow. For the time being though, he is doing just fine.

I held Jack today for a relatively long time. It felt so good, just the two of us. The little man was wide awake and looking around. I told him how much I loved him, how much I believed in him, how brave, strong and smart he was. He smiled.

Thank all of you for keeping the prayers up for Jack. The prayers he receives are a blessing to us and are helping keep Jack strong through this. Robin and I look forward to reading the posts everyday and are so frequently moved by the content. It is amazing to know the support that is out there and absolutely confirms my belief that God has placed each of us here to help each other out...in our own time and way. That is quite the comment from someone who gets a little too cynical from time to time.

Our friends down at Bliss, I can't thank you enough, I always felt that the military was a part of my family and now I know why. (I'm an Army Reservist and Robin comes from a military family as well).

Please keep spreading the word about Jack and direct people to this website. It may seem like a small thing to ask, but I'm not kidding when I say it means so much for Robin and I to read the posts. Just to know that Jack is not alone...has so many people supporting and cheering for him is plain awe inspiring. I cannot agree more with the notion that you can never have enough prayers. God does hear them all.

One day closer.

TTFN

P.S. I forgot to mention this, but Cooper is doing fantastic! He is looking great, growing hair and really starting to explore the world around him. I think he still likes me, but I'm not sure... last night while feeding him at 3 a.m. he decided to spray Dad with shower from his bottle--warm stuff! It was gross, but at least he felt better afterwards. Robin still 3/4's asleep said, 'oh you may want to burp him, I didn't last time I fed him and he probably needs it.' Thanks.

Monday, October 11, 2004 4:33 PM CDT

Day 66

From Dad

Jack is doing fine today. His central line in his left arm is starting to plug, so they'll have to replace it with another later today. A month ago this would have been a big deal, now it seems as if it's just another thing Jack has to go through. He'll probably be carted off to a procedure room somewhere and pumped full of sedatives tonight. A young Resident will get a chance (he better be thoroughly supervised or I'll get my chance to practice with a scaple on the Resident) to "re-wire a pic-line". Jack will then slowly come out of the artificial slumber and wake up and will be fine. The nurses will have a fresh point of entry into Jack to pump the meds that he needs and I have no doubt Jack will be fine.

The infection in his lungs is being treated with the neb twice a day. It seems to be working as his secretions are clear.

Finally, he was visited by a Physical Therapist today to work on his head shape, ears and general muscle tone. He's been lying in his bed for over three months now and probably needs a little work. Like Cooper, he favors one side over the other (Cooper his right and Jack his left) because of their position in the womb (it was crowded in there!). In order to fully strengthen his muscles (particularily the neck muscles) he has to be constantly positioned differently. Jack has to have his head pointed towards his right and Cooper to his left.

These are pretty minor items in the scheme of things and by in large Jack is having another good day. Praise the Lord, keep 'em coming!

I was walking by Jack's old room just now (before he was mysteriously transferred to his present one -- see last Thursday/Friday) and saw another child's name on a different door. I think this is probably the 10th or 11th child in and out of that room since Jack's been here. I said something sarcastic under my breath and realized that I'm starting to get too comfortable around here. In the Army or my civilian jobs I always knew it was time to leave and do something different when I stared to get this way. The problem here is that I don't get to make those choices. Before it was only my job or career; now it's my child. Again, another illustration of the loss of control over the most dear thing in life. It is so frustrating! (Also a perfect illustration on how these types of events crystalize priorities in your life.)

I guess though you can't do much about it and have to keep driving on. You have to trust God has a plan and it's being acted out. You have to have Faith. Jack is a real trooper and is really doing marvelous considering the things he has been through. He's a tough little guy, a sweet little man and has the gravitas (sp?) of a true hero. In any case, he's mine.

Thanks again, one day closer.

TTFN

Sunday, October 10, 2004 1:50 PM CDT

Day 65

From Dad

Is this 2003 or 2004? Last year the Twins drop two to the Yankees at home on this weekend and the Gophers blow a 4th quarter lead to the Wolverines...I guess there's always next year. Both teams did play better this year though and there is renewed hope for next.

Jack is looking great. Jack was looking straight into my eyes and was glad to know his parents were here. He got excited and was smiling. His little face is getting bigger, and if you can believe it or not, his eyes are getting bigger as well. His hair is really starting to come in, and at first we thought he'd be fair haired with a tinge of red, now we think it's going to be dark. It's coming in much thicker and darker than Cooper's right now.

Cooper is doing fine. He had a great night last night, still woke up three times, but each time was very matter of fact, none of this "I can't sleep" stuff. He got his diapers changed, wolfed down his bottle and then right back to sleep. Good boy.

This morning as I was getting ready, I put Coop downstairs in his Kick-n-Play seat. I put in a Baby Einstein video in the big TV and went to get ready. Coop didn't move his head more than 2 inches either way for about the next hour. He was fixated on the video of little fish and crabs moving around. All the colors and movement- wow!

We thought we should get something like that to help Jack develop also, so after church, on the way to the Hospital, we stopped and bought Jack a couple of video's. (He has a VCR in his room.) We'll see if he like this as much as Cooper.

Another day in, another day closer.

Keep praying, we are.

TTFN

Saturday, October 9, 2004 5:31 PM CDT

Day 64

From Dad

What an absolutely gorgeous day outside. The trees are almost at their Fall peak and it's a balmy 65-70 degrees outside. I spent the whole day working in the yard. A little physical work feels so good and is such a soul cleansing form of exercise.

Cooper and Grandma went for a walk today, unfortunately Coop didn't like the weather as much as his old man did. He fussed and kicked off one of his shoes, causing Grandma to search for it for about a half hour. She eventually found it and then brought Cooper home. He did his usual stuff then... ate, dirtied some diapers and then went to sleep.

After finishing my lawn work, putting the pond and lawn to sleep for the upcoming winter, we packed up and headed in to see Jack. Jack is having a good day. He has developed a slight infection (at least that's what we think) down his throat and in his lungs again and is now on a 2x daily antibiotic mist. Whatever, if anything, he has is very benign and we all think he'll conquer this with no problem in a few days, that includes the doctors too. Other than this, Jack is looking good and has perfect stats. We've even had a few of the nurses stop in and ask, "Are we sure he's still sick? He looks so good." Apparently Jack is the exception to the norm in heart failure babies. If you did not know his heart wasn't functioning properly, you wouldn't know he was sick.

Seeing the twins together is great, I can't wait until it's a normal everyday event. I can't wait to see them playing together and helping me outside. I can't wait to watch the ball games with them. I can't wait to teach them how to play the different ball games and fully understand the virtues and vices that sports competition teaches you in life.

As I was holding Jack today he peeked at me with his one-eye trick. It was if he was asking "Who is this, who's holding me?" The look broke my heart. I pray that he knows that I love him...I tell him everyday. I also tell him that "even if I'm not there, I'm still with him," so he knows that our bond is special and he can rely on me for anything. I hope he knows these things, mostly because I couldn't stand for him to think that he's alone or scared for any reason. I feel as if he knows these things because he is usually such a happy baby. He smiles and plays with everyone who stops by.

Anyway, it's a beautiful day and Robin and I have two beautiful boys. It's another day in and one closer to getting that heart.

TTFN